Jane McLelland protocol / COC protocol for STAGE IV members ONLY
Hi 😊
Just wondering if anybody in here is doing the Jane McLelland (COC) protocol?
If yes: For how long and did it have any effect?
I’m seriously considering it but need to hear from other MBC’s whether to do it or don’t.
Thanks in advance and hi from Denmark
Comments
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Divine,
You have raised the question of the hour -- why does any drug work for some but not for others? You raise the lymph node issue, and I think that's probably as valid as any other.
I, too, think the Chris Beat Cancer guy is a quack, and just throwing stuff out there. I wouldn't take anything he says as informative or accurate. Happy that he beat his own cancer; not happy that he's trying to capitalize on that.
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Im sorry I think some of you are missing a step here...this is not about "CHRIS"....this is about what he said and about Mebendazole and Fendbendazole (bc the same thing can happen with both) and what he said is not unfounded...lets be clear here even Jane admitted that this can definitely happen if you are not blocking all the pathways... PLEASE do not misunderstand me this is not me STICKING UP FOR THIS GUY....I don't follow him...but I say again... there is no denying what he said is true..and Jane even confirmed it. So let's not just sit here discrediting him...that, to me is not what matters here...what matters here is that the statement he made about Fenben and Mebendazole has happened to many people...I only posted the story of a couple of people that it happened to...but there are more.. Now, whether this happens because of lymph node involvement I do not know I personally do not think so but hey what do I know. I think it is more about what Jane said and what you need to do to prevent it....again the problem is not Chris...the problem is some people are seeing a big progression on these and if they are not properly blocking autophagy its going to happen. Just for the record if you have not seen Janes interview with Chris...its pretty good.
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Chris Wark just posted on Facebook a couple of research articles about how fenbendazole activates genes that promote hepatocarcinogenesis in rat livers. He posts that in support of his hypothesis that fenbendazole promotes aggressive metastasis. That is way off base. Firstly, rats are especially prone to cancer. Even inert substances can cause cancer in rats. Secondly, hepatocarcinogenesis is about new, liver cancer, in rats. Not about promoting metastatic cancer to the liver, or proliferation of metastatic cancer. Metastatic breast cancer is breast cancer, not liver cancer. If what he was suggesting applied to humans, we would be seeing liver cancer, not proliferation of metastasis to the liver. Its apples and oranges.
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Husband,
Thanks for that information. Makes sense to me.
Nicole,
I think everyone realizes that you aren't sticking up for the guy -- but that article that the person posted on the Repurposed Drugs Facebook Page from PubMed (and the link of it that I reposted here for JFL and others) makes me think that it's not just as simple as blocking autophagy -- it seems to be a very complex situation beyond that. I read the article twice, and I don't fully understand it, but I get Jane's point about not blocking all pathways at the same time and how that is detrimental to the objective here.
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hi all, Joe responded in details on his blog, months ago, to an earlier worry about FZ damage to the liver...he said that in those clinical trials they used huge amounts...like 100 times more than what he's taking...
Of course, he would be the first one to know, since he's the one that's been on FZ the longest.... and wouldn’t the COC doctors be aware by now of these repercussions? Hummmm....
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what Joe posted about is different than the people I spoke to and posted there situations they were taking the 3 days on 4 off and the mebedazole 100mg 1 time a day. They had progression.
Whether chris said anything or just those people posted their story...what matters to me that I need to inhibit autophagy. I need to be sure to block all paths. To insure that doesnt happen to me.
Husband I appreciate your post and thoughts I just dont think I am looking at any of that the way you are. I dont care who posted what even his study i just dont have a care about that bc I already know that Jane and others confirmed this can happen it is happening to some people. I know there are many ppl that have seen progression on this med the question for me is what am i gonna use to insure that doesnt happen .
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Nicole, I agree its wise to cover as many pathways as possible. Also to employ as many cancer killing techniques as one can without causing counter productive drug interactions or simply make yourself ill. Yes, its not about the messengers, but the message.
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the question is whether they would have had progression anyway even without those drugs and as far as I understand only studies of the rate of progression of people on -azoles compared to the rate of progression of people without them with the same level of disease can answer that question ...
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The people whose stories I read and spoke to some of them (and I think one is on here) was NED for a while...then added that in and a few months later bam.....
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Nicole, thanks for posting information about where I can further look into the impact of intermittent fasting and BevJen, thanks for posting the article. I am going to research this further. It just seems like "the house always wins" and cancer finds a way around everything. Our bodies have so many different dynamic functions going on in orchestra, it is hard to know which are having a true impact at any given time. This definitely seems to be a complex issue, as are most issues with BC.
Nicole, on the topic of autophagy, I did recently read in another thread that the Chinese herb, baicelein induces authophagy by inhibiting the PI3K/AKT pathway. I have not done any research myself and have no background on this herb but wanted to pass along the information in case you want to look into it. Also, I can't recall if you have a PI3K or AKT mutation.
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JFL,
Please let us know what you find out adobe intermittent fasting and Stage 4. Totally unrelated to breast cancer, but my daughter, who is in absolutely great shape and knows a lot about fitness (she's a three time Ironman finisher, does triathlons and marathons all the time -- you get the picture) was talking with me the other day about intermittent fasting. She did not provide any articles in support of this (this was a casual conversation, after all) but she said that intermittent fasting is not great for women in general. She said most of the testing on IF was done on men, who have a different fight-or-flight response than women, and that for women, IF (and fasting in general) can induce much more stress on the system than on men. I don't know how that shakes out in all of this -- perhaps it's good to induce stress on the system when talking about Stage 4 and autophagy -- but I thought it was interesting nevertheless so I pass it along.
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JFL..thanks for the herb info.
I think we need to clarify when talking about IF which way we mean..... Do you mean IF for 2 or more days? Or do you mean IF 14 hours a night? When I talk about it I am talking about 14 hours a night.
I read something someone posted today that said this:
"I read that autophagy starts after 3 days. Its primary purpose is to clean up cellular junk...initially maybe cancer cell's recycle the junk for growth, but once the ready supply of junk had been used, wouldn't you like think that big junk ...like tumors...would be next?"
Now..that would go in line with what I heard Jane say about 2-3 day fasting.... either way for me, I cannot do that anyway 1. My chemo is 1 week on 1 week off and I really don't have an "off"week.... and 2. I am under weight....
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Nicole, for my personal experience, I do the nightly fasting only and only 13 hours at that. Most days I cannot do 14 hours due to my work/home schedule and am content at no less than 13 and sometimes more. I have never done the fasting or fast -mimicking for days at a time. I recently gained a few pounds and have no desire to lose them again as I was struggling with low weight for over 2 years. I would worry that fasting several days at a time would make me too thin and lose more muscle. Also, there is no way I could work, keep up with my son and handle any of my chemo treatments if I fasted for days at a time! Hats off to anyone who can do that. I only know one person who did the Valter Longo 2-3 day fasting around chemo treatments that but sadly, it didn't seem to help much as she passed about 6 months later, in what seemed to be a somewhat shocking, abrupt, premature fashion.
BevJen, interesting about what your daughter mentioned about IF and stress on women. Do you know if she was referring to the nightly 13 or 14 hour fasting or fasting for several days at a time (or both)? I could see the multi-day fasting causing too much stress but the nightly fasting may not have the same risks. I hope not! I will need to look into it more as well.
I must say that with the nightly fasting for 13 hours, my body loves it as if I have fallen into a "homeostasis". This is not related to the BC but just for general wellbeing. My body kind of expects it now and eating during this time is no longer appealing. I think my body likes to "close down the kitchen" so that the workers can go clean up and repair other areas of my body. I only had to make some minor tweaks because I was nearly doing the IF anyway. I now try to finish eating by 8 or 9pm (usually 9) and then eat breakfast around 10am most days. The only difference in what I did before I started intentionally nightly fasting was that if I was hungry, I previously may have had a mini snack or some fruit at 9:30 - 10:00 pm. Now, I just make sure I move those calories I used to eat around 9:30 - 10:00 to before 9pm. I was already going 12 or more hours of fasting without trying to do so.
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Re: IF. I also read a post on that topic yesterday stating IF was bad for stage iv cancers. They were talking about it was okay occasionally, no more than 14\10. Someone asked for an article and the person who posted the comment didn't have one without doing some research. I do 14\10, and like you JFL, I feel better doing IF. I tried finding something on topic but couldn't find anything stating it was bad for stage iv.
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No scientific evidence for what I’m about to say but I hope no one minds my two cents. A 13 or 14 hour fast is not really much more than “don’t eat after dinner is over and maybe have breakfast a little late.” It’s basically what people did in my grandparents day, just because it was sensible and moderate to not overeat.
You’re probably asleep for eight of those hours if you’re not battling insomnia so it’s basically just allowing your digestive system to rest overnight and to allow food to be fully digested.
It’s not extreme and from what I’ve read about IF you need to go 16 hours or more to induce Autophagy.
Personal anecdote, I was sometimes doing 16 hour fasting and eating 1000 calls or less during chemo and I got to NED. Obviously not for everyone and especially for those who are underweight or struggling to maintain weight. But for me, it doesn’t seemed to have harmed me. I’m not doing this now but I did do it during Taxol
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I replied to a woman on FB that was saying that Jane said fasting is bad for Stage 4...(she never said that) what she actually said and didn't say about fasting in the Moss interview was not that at all. Turns out Jane "Liked" my reply and gave it a thumbs up lol. Anyway then she posted this to the same women:
I don't believe I have said 16/8 is bad for stage 4. At this moment I believe it to be useful even for stage 4 until I am convinced otherwise. But nothing has convinced me to change my mind so far. This is not medical advice, just my opinion.
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Anyone know if anything in the COC protocol can cause a drop in hemoglobin? My wife has been on COC for a week now, and just had her bloodwork done. All liver values improved significantly from the prior test 30 days ago, but her hemoglobin has fallen to the 70's. That is where they recommend blood transfusions. Any idea if a component of COC could cause this? Or the prior time on Fenbendazole?
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Husband, you can exclude the FZ , I’ve been on it since May and my hemoglobin has not changed at all...I have not been doing the COC properly for various reasons. I plan on starting again soon.
I will be using the quercetin instead of the statin, the doxycycline, and I’m already on the metformin...
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Thanks Frisky. My wife was sick leading up to the blood test, and didn't eat well for 2 or more weeks. Not sure if that could be the cause, or another symptom of whatever was pulling her hemoglobin down. It's odd, her platelets are up, neutrophils low as usual, liver enzymes excellent, but hemoglobin down real low. She is going to be re-tested on Monday, that is how worried they are about her. Hopefully, no further fall. She has started taking polysaccharide iron, eating liver and beef. Also taking B12.
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the change in diet should help...I wish her well...I'm reposting this from the bone Mets thread...there's a warning about the use of antioxidants while undergoing chemo... you might want to look at it husband...
I honestly don't know what to make of it....without my supplements I would have been dead already...omega3 and magnesium are more effective at dealing with aches and pains than fentanyl...mo create problems with their treatments that they themselves have no solutions for....like hemoglobin levels being low...that's not normal, yet they wait till there's an emergency, but taking b12, iron etc etc oh no....that will interfere....with what when the survival rate is so damn low....
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Chlorophyll is what someone had me take when I had low hemoglobin during pregnancy. It's a dark green liquid, tastes minty, and you put a few drops in some water. It brought my hemoglobin up.
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Frisky, the conclusions of that study are in line with what my MO told me when I started chemo. I followed her advice except for the part about “its okay to take a multi vitamin”. I didn’t bother. If vitamins “are bad” how can they be okay in multi vitamin form? Regardless of study results...
I just didn’t take anything except the d3 and calcium she told me to take plus b6 to try to avoid nail loss and neuropathy...I didn’t tell her about the b
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Well, she's not taking the iron and b12 for shits and giggles. If her hemoglobin stays this low they will either take her off treatment or have to give her blood transfusions. I'd say one must chose the lessor of two evils, and staying on treatment with ibrance is pretty important to keeping her cancer at bay. As her iron stores are low, confirmed by the blood test done by her GP, then worrying about supplementing with iron is the least of our concerns.
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Husband,
I think I read somewhere that metformin causes a decrease in b12? Could that possibly the issue? Did you send COC an email asking them?
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Yes, I just today sent COC a copy of the bloodwork, and raised my concerns.
When we had the consult with COC, they followed up with a nice detailed letter, that had added advice. It stated, as you have said Simone, that metformin causes a decrease in B12. So my wife had her B12 tested, as she has been in metformin for many years now (she started taking it purely for anti cancer properties) and to our surprise, her B12 levels were normal. We started doing B12 shots about 2 weeks ago. Just after she got back her test results, we didn't want them obscured by the injections. I find that injectable B12 really helps with sleep and maintaining a calm state of mind. It makes my dreams much more vivid and I wake up feeling refreshed.
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I hope they can figure out what is going on. My hemoglobin was low last month, but normal this time. Actually, all my counts were really low. I had an abscess tooth which I had to get taken care of before starting back on ibrance.
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I shared with my MO that I am going to now add in the Propranolol and that I also was prescribed LDN.... She was fine with the Prop....It's me that is worried lol as it can lower heart rate...so I have to keep an eye on that I will probably add it in in a week or 2 since my son and future daughter in law are coming tomorrow for 4 days I want to feel as normal as possible. She was not all on board for the dipryidmole....
but I get why....its a blood thinner and can have numerous interactions....0 -
Just wanted to pass this along -- For anyone in Canada who is interested in COC, I received a newsletter via email the other day from Care Oncology -- it said this:
Great news for our Canadian patients! Care Oncology has secured COC Protocol™ bundled pricing. Shipping is available to all provinces. Ask your case manager for details.
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Great news for Canadians. Thanks for sharing, Bev.
I am switching COC MOs. Mine still hasn't let me start the statin and I have been on the protocol for 2 months. I have asked each time I upload a new liver panel to the COC portal and just receive a canned response "continue to hold off". The MO wants me to wait for my liver enzymes to go down as she thought they would go down when I started taking milk thistle and that they were elevated generally from treatment. I subsequently told her it was not likely they were going to go down, that I suspected I was progressing on my current treatment and if she still had the same opinion about holding off and never received a response. My liver enzymes were only slightly elevated when she told me to hold off on the statin (1.5 x upper limit of normal) and I know of others with much higher liver enzymes who were given the statin. I haven't really heard of anyone being denied the statin except for me.
She did tell me during my initial consult that the protocol is more aggressive in the face of progression, the standard "rules", such as holding off on the statin or taking a reduced dose no longer apply. In such case, doses of certain drugs are increased and often the mebendazole and doxy will no longer be rotated and may be given simultaneously instead. I had a confirmed progression 6 or so weeks ago and treatment change and she still wouldn't let me start the protocol. On my last liver panel I uploaded to the COC portal, my liver enzymes were improved. Hopefully that means Gemzar is working. I asked about starting the statin at that point, nearly three weeks ago, and the MO hasn't responded. What a joke. The rest of the staff is responsive. I understand that the COC MOs don't view themselves as taking a role in active care between the quarterly appointments but if the MO orders me a medication, I pay for it and it is shipped to me and tells me to hold off on starting it, continue to upload my bloodwork and check with her before starting, then what else am I supposed to do?! I think this is an isolated issue as others have not had the same experience. I already spoke to the COC about switching MOs. They didn't even ask why I was switching which was a bit surprising.
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JFL,
I wouldn't hesitate to change MOs. It seems to me that if your current MO isn't responding, then you should move to someone else who will respond. That's ridiculous. Even if they started you on a lower dose of the statin, it would seem that they could monitor you on that and increase/decrease based upon blood tests.
Perhaps someone who is using COC will respond to you. I haven't started it yet -- just responding on principle.
And hoping that the Gemzar is doing its thing, too.
It sounds, too, like COC may be a victim of its own success -- perhaps they do not have adequate staffing to accommodate the folks who are starting their protocol?
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JFL,
That's terrible the way that MO is treating you. Can I ask who it was? I have Dr. Mendez and I really like her. I haven't had any issues with my liver enzymes but I only take 40mg. The 80mg made me sick.
Do you have the pills? Maybe just start taking them on your own but half the dosage?
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So...I am pretty convinced now that the Xeloda is not working....my itchy skin condition that went away when Ibrance was working and came back when it stopped....is not back worse than ever. It has not been this bad since before I was diagnosed Stage 4.
And it is in the same old spot...elbow. I know this is not from meds...or from anything else...its been 2 years of it and the derm in NY said it is from cancer...and again, I re-iterate it went away when Ibrance was working and returned along with the pain in my sacrum when ibrance stopped. Pain in my sacrum is also back. I will be writing to MO today...next step is taxol or immunotherapy trial depending on how aggressive progression is 0 -
Nicole,
I am so sorry to hear of this. Hope your MO will get you in for testing, etc. ASAP to see what next steps may be. You had an inkling that taxol might be the best way to go, and maybe that's so. Hope the MO is very responsive in a quick way.
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JFL, I’m playing devil’s advocate here....is it possible that what they are finding—as results are reported—that the statin is not effective as expected? I find it strange that she’s not communicating....
Ultimately, switching MO might provide the answer or the additional treatment you seek.
I stopped taking everything during the holidays, except for the doxycycline, but now I will start again taking the FZ—1 gram only— and the quertcetain instead of the statin. At 40mg my cholesterol levels dropped too much too fast..
Nicole, I hope taxol works well for you...you’re courageous!
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sorry to hear that, Nicol.
Hugs and mental good vibes to you.
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Nicole,
Sorry to hear madam x isn't working. I was hoping we could all get to stability on our current treatments.
Frisky, how are you doing? I thought you had a scan coming up. Anyone hear from Snooky?
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Hi Simone,
No scans for a few months. I just switched treatments recently and I'm on Navelbine these days. I'm suffering no major SE, other than the usual fatigue and damage to my blood, but I'm not sure it's killing cancer cells either. I'm currently debating what's worse? The cancer or the treatments?
If I did nothing, would the cancer grow at the same rate as it's doing while undergoing chemotherapy? I plan on asking my MO next week, but I think I known what she will say: we don't know....
I know JFL is one of the few long-term survivor of chemotherapy, so in her case treatments seems to be advantageous....But, I noticed she also repairs the damages with natural supplements and alternative therapies....she's my inspiration!
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Take a look at that article that I posted about A-LA and hydroxycitrate. It has worked for a number of people in small scientific trials. It's similar to COC, in that its an anti-metabolic treatment strategy.
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I did Husband, and I've already ordered the hydroxycitrate. will start taking that combo as well.
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Husband,
I read the article you posted also. I was taking hydroxycitrate but just added ala. I take so many pills now it's crazy.
Frisky,
I was thinking about taking a break from all the supplements. Did you feel any difference?
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Simone,
Not really...I truly suffer aches and pains if I don't take omega3, magnesium, calcium, and D3...they greatly affect my health
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JFL - Maybe you could try Red Yeast Rice supplements until you get a prescription. The Red Yeast Rice contains a naturally occuring form of lovastatin. Who knows how much lovastatin the pills contain though. Since there is no regulation, I would try a good supplement brand.
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Thanks for all of the replies.
Simone, I have Dr. Mendez. She was great during the 30 minute, $800 consult but went MIA afterward. I know others with Dr. Yang who have had a different (better) experience than me in similar situations. Mendez was a generalist MO in a small community hospital. She may not have much experience with liver mets or breast cancer liver mets and is therefore, overly conservative. None of the 4 COC MOs is particularly an expert in BC mets, unfortunately.
Frisky and Simone, part of the reason I have held off on starting the statin (despite having the pills in my cabinet) is that maybe she does have good reason but is just an awful communicator and a failure when it comes to responsiveness. I get the sense these MOs have a day job and moonlight at the COC. I did actually take the statin for a few days but noticed a rash on my neck and stopped taking it. It is possible the rash was caused by the statin, progressing liver mets, stress, a strong retinol beauty product I started or some combo of those factors. Since then, I have been holding off. If Mendez would just respond with something more than “continue to hold off” and explain why she is saying that, perhaps that would be enough. However, I have posed questions about why and they have all gone unanswered.
I believe the Gemzar is working. My liver enzymes, Alk Phos and CA27-29 are going down. CA15-3 has remained normal and was never elevated. My liver enzymes and Alk Phos went down after starting Gemzar, then randomly flared significantly 2 weeks ago while my CA27-29 continued to decrease. My MO thought it was the Gemzar, I was hoping it was a liver mets die off flare. As of yesterday, my liver enzymes and Alk Phos dropped significantly, not too far from normal. My liver has felt inflamed and swollen at times since starting Gemzar in a way I haven’t felt before.
KarPC, I will look into the red yeast extract.
Nicole, I am sorry to hear the X may not be working. You know your body and the rash you have experienced with mets. It must feel scary and disappointing. I hate this disease
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JFL,
It's Good to hear that your doing well on Gemzar. I haven't had to contact Dr Mendez outside of my appointments. I'm looking into Mark Rosenberg a NP, who has experience with drugs to block the pathways. Quite a few people have recommended him so I may leave COC. I just feel a little overwhelmed by all the pills I need to take to block all the pathways.
Frisky,
Does your insurance cover the scripts since you get them through your PP?
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yes, Simone,so far the PP scripts havebeen covered by my insurance.
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Thank you JFL
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Dear Nicole, I am sorry you feel so bad... Gut feeling is important, you have to listen to it, but I hope it is just a false alarm, and X is indeed working. Pains are also what people experience when tumors die. I believe that is true and your next scans will only confirm it... can you have an ultrasound to check what is the situation? It is cheap, quick, and with skilled radiologist produces very clear picture of what is happening? Saulius
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Thank you Saulius...I will message my MO this week...I am giving a little more time to see if my skin clears up...I will definitely ask about an ultrasound I didn't even think of that so thank you for the suggestion.
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Yes, dear Nicole, here at NCI they do "interim" ultrasounds, i.e. MRIs/CTs every 3 months, and ultrasounds in between, means 1.5 month after last MRI/CT, so basically 4 MRI/CT and 4 ultrasounds annually. I find it a good practice...
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Simone, I'm here. Thanks for asking. Just nothing to report. I too stopped all supplements. The stress of trying to figure out the protocols, are anti-accidents (sp)
good or bad kept crashing in on me. And is Zeloda even working? I hope so, it's an easy treatment. Since I have no cancer in vital organs (Praise God) I need time to get my head together.
I said nothing is happening but that is only with the cancer. My other life, became interesting. Car won't start (repairing would be prohibitive) Christmas tree fell over, a friend came over to help me stand it up and stepped on the bottom of it crashing the legs. It's history now. And.....my TV stopped working, not that I watch it that much. So I'm just trying to chill and put cancer treatments "on hold" 'till I get my head together.
Glad to hear that all of you are doing relatively well.
Katiesmith….my second week is bad also. Luckily I rebound on week off. Praying for your counts to go up.
Edit Couldn't sign off without a shout out to my buddy Frisky!
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Hi Snooky I was thinking about you just this morning, but noticed you had been quiet on other boards as well, now I understand why....sorry about things falling apart...my big ass tv stopped working as well, but I've been unable to even conceive going out to buy another one...not that important...instead I'm using an iMac as a screen for Netflix and Prime...that was just sitting there un used...it will have to do for a while...
Yes, it's hard to continue with the various protocols after the hiatus I took during the holidays....my faith is flailing and my skepticism at an all time high.
But I started yesterday with the infamous tea that Saulius posted weeks's ago...just finished a cup. It's tough to swallow but I did it! Will it make any difference? Who knows?
Big hug to you all and Happy New Year! I miss our old discussions about alternatives, they kept hope alive....
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Snooky,
Sorry to hear about things falling apart. It seems like when it rains it pours.
All, I learned of another benefit today with taking metformin. I was diagnosed with ONJ today. The oral surgeon said that keeping the blood surge r low is helpful to reduce the risk of that spreading. He was happy to see I was taking metformin. They also use antibiotics to treat that. So I guess no pill vaca for me.
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update....started taking the FZ again today, but only the 222mg dose...4 days on 3 days off...I have nothing to loose...it might not cure me but it might slow down the disease...
The FZ is still priced very high on amazon....apparently people are still buying it.
Having to rely solely on my MO and chemotherapy makes me want to jump off a bridge...I have to do it because it keeps hope alive..
I’m of course taking the metformin and will start adding the quercetain drink soon as a substitute to the statin.
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Reminder Guide to McLelland protocol.
THE GLUCOSE PATHWAYS
Glucose Transporter 1 GLUT1
- Statins – atorvastatin (Lipitor) 20mg to 80mg QHS
- Quercetin: 500 mg BID
Insulin
- Low Glycemic Index Diet or Ketogenic diet
- Metformin 500 mg BID or TID
- Berberine, from Chinese medicine; 500mg TID(max 1.5 g /day)
- Chromium picolinate (CrPic) high 1000 mcg( 1mg) QD or moderate 600 mcg, QD
- Pentpose Phosphate Pathway (P P Pathway)
- DHEA (supplement) – Dehydroepiandrosterone 100 mg oral daily. Max 400mg QD
Oxidative Phosphorylation (OXPHOS)
- Berberine 500mg TID(max 1.5 g /day)
- Doxycycline 100mg PO QD or BID
- Metformin 500 mg BID or TID
- Niclosamide 2 g on Day 1 then 1 g once daily for 6 days. Treatment may be repeated in seven to fourteen days if needed. ALT dosing: 2000 mg daily for 1–7 days. Safe at 500mg TID; Poor tolerance beyond 1000mg TID
Aerobic Glycolysis
- High Dose IV Vitamin C Salt. Doses vary. 50-100 g IV weekly
- Dichloroacetate (DCA ) Recommended DCA daily dose is 20 mg/kg daily per DCA Guide. 5 days on, 2 days off.
- 2-Deoxyglucose (2-DG ) safe; 63 mg/kg was selected as the clinically tolerable dose from a phase I trial.
- 3-Bromopyruvate (3BP ) N/A dosing
THE GLUTAMINE/AMINO ACID PATHWAYS
Insulin like growth factor-1 (IGF-1)
- Metformin 500 mg BID or TID
- Tamoxifen 20mg PO QD
Glutamine oxidative phosphorylation
- Berberine 500mg TID(max 1.5 g /day)
- Doxycycline 100 mg PO QD or BID
- Metformin 500 mg BID or TID
- Niclosamide 2 g on Day 1 then 1 g once daily for 6 days. Treatment may be repeated in seven to fourteen days if needed. ALT dosing: 2000 mg daily for 1–7 days. Safe at 500mg TID; Poor tolerance beyond 1000mg TID
mTOR (mammalian target of rapamycin or mechanistic target of rapamycin)
- Metformin 500 mg BID or TID
- Berberine 500mg TID(max 1.5 g /day)
Macropinocytosis
- Chloroquine Hydroxychloroquine 200 mg QD or BID
- Loratadine Claritin 10 mg QD is usual dose; Loratadine 40 mg once daily up to 14 days was effective and safe in clinical trials.
Nucleoside Salvage
- Dipyridamole (Persantine) 50-100 mg TID; The recommended dose is 75-100 mg four times daily as an adjunct to the usual warfarin therapy. In another trial, aspirin (30-325 mg daily) with dipyridamole 200 mg twice daily for 6 months are safe. Dipyridamole 75 mg TID during the FU administration.
Glutaminolysis
- EGCG 200 mg TID
- Ursolic Acid 150 mg QD, BID or TID
- Curcumin, BCM95
- Resveratrol 20-5000 mg daily; Most clinical trials use 500mg or 1000mg QD
- Asparaginase L-asparaginase; This is a chemo by IV
- Bis-2-(5-phenylacetamido-1,2,4-thiadiazol-2-yl)ethyl sulfide (Doctor?) – aka BPTES
THE FAT PATHWAYS
Acetate + SREBP-1
- Berberine 500mg TID(max 1.5 g /day)
ATP Citrate Lyase (ACLY)
Hydroxycitrate 500-1000 mg TID
Fatty Acid Synthesis (FAS)
- Metformin + Aspirin
Fatty Acid Oxidation (FAO)
- Doxycycline 100 mg PO QD or BID
- Mildronate
Mevalonate + SREBP-2
- Statins + Dipyridamole
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Simone, I'm so sorry to read about the ONJ, I hope your doctor can help you to successfully resolve it...or manage it....
How does he know it’s ONJ and not an infection or absessed tooth?
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Simone, ONJ is not something we ever want to hear. Sorry you are dealing with that. I have been dealing with what the oral surgeon described as "Stage 0" ONJ for about a year now in a few places. It initially caused an abscess in my gum but after a few rounds of antibiotics taken for an unrelated sinus infection before I was ultimately diagnosed, the abscess healed. The "bone sequestration" issue has remained in my jaw, but under the gums with nothing breaking through the skin. It hasn't gotten worse but hasn't improved either. Good to know metformin is a good thing for ONJ. In addition to antibiotics, you will probably be prescribed chlorhexidine mouthwash which helps.
Frisky, when I was getting my whole ONJ issue diagnosed, it was truly the only time in my life I was ever hoping I needed a root canal due to a tooth abscess (versus ONJ). I tried to tell the oral surgeon's assistant that when I was having my oral CT and she was trying to make conversation and comfort me but she wasn't really getting the joke/truth of the situation. She just kept telling me "good luck" and "I hope you don't need a root canal". I know what you mean about missing the discussions and hope we all felt in pursuing some of these alternative treatments in the beginning. I think we all hoped for game-changer results which we just are not seeing. That is not to say that there is no benefit but so far, I am not seeing any game-changing results on these threads.
I just finished my full second month on the COC protocol and am switching back from doxycycline to mebendazole.
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Frisky,
There is a spot on my lower jaw that doesn't have any skin on it. It's weird looking, my jaw bone is showing through. The oral surgeon basically scraped the bone which didn't hurt. He said it would have hurt if the bone wasn't dead. I have stage 1. It doesn't hurt which is a good thing.
JFL,
Did they take you off xgeva? I asked the oral surgeon if I should stop getting my shots. He said it doesn't matter. Once a person starts using those types of drugs it stays in your system for years.
I have to have another root canal or tooth extracted. The dentist and oral surgeon are discussing what would be the least risky. The dentist wants to extract the tooth because root canal release all kinds of toxins in the body. The oral surgeon recommends a root canal since ONJ is a risk. I'm not really sure what to do.
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Frisky,
I've read that er+ cancers should not take DHEA or resverastrol.
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Simone, in your position, I would opt for the procedure that would preclude the breaking of the jaw if that is a concern....otherwise remove it and get it over with...
It's not an easy decision...Hopefully your dentist is like mine, someone that gets all excited by situations that other dentists refuse to touch...too bad he is getting old now...but he recently saved a bridge, my dental oncologist insisted had to be cut down. He noticed a cavity and just filled it...so I'm still using the bridge. That was two years ago....
sending you my good wishes for a successful outcome!
Thank you for the resveratrol warning...
PS I was quietly taken off xgeva almost a year ago...never asked why, but I suspect the unreported findings are terrible about those medications....
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Regarding game changing results. I am still getting good TM numbers. But I am on the I\L combo. We all know that combo is potent for some women and it can work for years. So I am not sure if the off label drugs\supplements are doing anything. I have my pet next week so hopefully I'm still NED.
There are some positive progress posts out there.
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This is an interesting read regarding taking off labels/suppl
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Simone, sorry to hear about the ONJ! Hope you find a good solution to the tooth problem. I won’t hijack this thread and go on about Xgeva, I just wanted to throw you a little more support x
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Thanks all for the kind words about ONJ.
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I dropped Zometa (like Xgeva) a month ago...I told my MO NOPE....after reading the stories of everyones bones just crumbling away after a 2 years on it...not interested. Plus there is no real benefit unless you have EXTENSIVE bone mets and even then...after talking to the people whose bones were crumbling away I still don't know if it would be worth it. My MO said ok.
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Nicole, if you’re not on any estrogen suppression therapies, Zometa is only destructive in my opinion. I read somewhere that the effects last for years, regardless. As usual, we are being overly medicated because they don’t know what they're doing and don’t give a sht!
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Frisky, where do you see your dental oncologist? Are they part of your team at MSK?
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Hi All,
I have been on the COC protocol for about 5 months, I am midway through my second round of Mebendazole. I wanted to try it because a: there seems to be little downside and b: I know that the standard of care with this disease is statistically unlikely to keep me around as long as I would like to be here. In addition to the COC, I am also taking Afinitor and Aromasin. My MO wasn't happy with my results on Ibrance/Faslodex, in hindsight I think we should have given it more time, but it's spilled milk now.
I want to share a couple of things as I work in the health and wellness space and know just enough to be dangerous regarding supplements.
1. Bio-availability is everything. Quercitin is not a highly bioavailable supplement. I am taking Isoquercitin which is a more bioavailable form of quercitin.
2. Regarding Red Yeast Rice, yes this works but the dosage needs to be quite high as the FDA has limited the amount per capsule so people don't use it as a drug. I don't think you will get the benefit you are looking for if you don't research dosing.
3. IV Vitamin C: It is critical that you get a dose that acts as a PRO-OXIDANT not an ANTI-OXIDANT. This is quite high needs to be done 2-3 times per week to achieve a benefit. Good reading on this: https://riordanclinic.org/research-study/vitamin-c-research-ivc-protocol/
Best wishes to all for a good year ahead! Let's all be here for 2021!
Stacey
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Sbaaronson,
Question: I just looked up Isoquercitin, and it appears that sometimes it contains? derives from? not exactly sure -- St. John's Wort. It doesn't say the same thing about quercetin. Would you know if this is so? If so, I don't think it can be taken with Ibrance. I'm pretty sure that in the Ibrance literature, it says not to take St. Johns Wort with that drug.
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Hi Olma, yes, I saw the dental oncologist at MSK.
Hi sbaaronson thank you for the info...0 -
Sbaaronson: Can you post some literature showing which Iso is better because there is Isoquercetin and there is Isoquercitrin....
Also here is some literature that Quercetin makes estrogen tumors grow in more in mice...any thoughts????
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BevJen,
This is what I take, https://naturalfactors.com/en-us/product/bioactive-quercetin-emiq-en-us/
Best,
Stacey
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Nicole,
This is what I am taking https://naturalfactors.com/en-us/product/bioactive-quercetin-emiq-en-us/
It's so difficult to derive what might happen in a human body from a rat or animal test. I believe the only studies (in terms of supplements) we can take to heart are those that are double-blind, placebo controlled. The problem is that these rarely happen as they are so expensive and there is little financial upside for the manufacturer.
Have a lovely weekend-
Stacey
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I read Jane's book and I plan on rereading it since there is so much info in it. Everything she says makes sence, I had incorporated the berberone, aspirin, vitamin d, selenium from 2 daily Brazil nuts and loratadine before I read the book . Since reading her book I have added holy basil and gymneva sylvestre. I have an appt with my onco coming up and plan on asking him to research the metformin and a statin, I'm assuming he wont perscribe it but its worth a shot. Is there anywhere legit online that those can be ordered wothout a perscription? Also I wondered if you intelligent ladies can tell me your opinion on quercetin for hormone positive cancer ( everything I read says its a ohyroestrogen)
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hi Angelica, if you bring some published studies about the benefit of those off-label medications, you might find that your PP would prescribe what you need....and they would, of course, monitor your health afterwards. Good luck!
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I will do that! My onco was in agreement with me on fasting during chemo because he read studies about the benefits of it so I'm praying he will look into the repurposed meds and perscribe them. Thank you for the reply☺
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Angelica...I just posted a link about a study for that on the previous page.
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Stacey..thanks for the link..to bad that has Vit C in it...I do not want any low dose Vit C.
What treatments conventional have you done and are you currently doing alongside the off labels and sups?
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So I am dropping the Statin and the Propranolol....
The statin mainly because I have a gene that pre disposes me to possible myopathy with statin use and for the past week I have been having weird muscle sensations going on in my shins....not risking that...and also not gonna risk it because in order for the statin to actually block any pathway it needs to be HIGH dose...over 40mg actually more like 80mg ...etc.
The Propranolol because I think there is a chance it is causing inflammation ....and also because you shouldn't really take it with Diprydamole and I just got that script. Plus the DPM blocks more pathways.
So I am considering starting the diprydamole and the mebedazole together and possibly even by next week. Originally I want to wait to add in anything until after my first scan but I don't see these making anything "not" work. Though the DPM I will start very very slowly at only 25mg 1 x a day for the first week...then each week I will in 25mg more until I get to 100mg a day.
And I will also be pulsing the metformin and berberine different as well.
Is anyone here taking the Diprydamole if so what mg and how are you doing?
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Nicole,
Where did you see that a statin needs to be 80mg? COC prescribed 40 mg for me since I had issues with taking 80mg.
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nicol , I tried 100 mg of dipiridamole(1 tablet) - I had headaches with it and probably blood thinning to a degree ( sure added by rivaroxaban and abraxane) resulting in a bllody runny nose.
I swapped it for chloroquine.
With headaches I found they eased off with time and I found it was better to take it in the evening so that I can sleep through them (for me usually started about 2-3hours after taking a tablet).
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Anotherone yea...thats why I want to start at 25mg..and work up. I know a few people that said the headaches did pass. I cannot get the Chloroquine...and I heard if you have liver mets its a no-no bc its very taxing on the liver.
Simone...many of my FB friends on the COC protocol are all being raised to 80mg so long as they can tolerate it...in addition to that I have been in contact with a MO that treats brain cancer and has been on board and wrote many papers even 10 years ago about off labels for blocking pathways and he personally told me that one of the biggest problems with most of the meds we are all taking to block pathways doses are too low and for "SOME" of those meds if we went as high as we would actually need to effectively block the pathway the dose would be too high to tolerate..but he also mentioned to me that 40mg -80mg is the likely needed dose.
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ok, thanks Nicole.
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just checked the dosage of dipiridamole I was taking(prescribed) - it was 200 , not 100 even !
Chloroquine- not sure about it either. Inwas prescribed it twice a week. The study that saulius found was talking about using it every day ! I have written to the study people asking them about it - they have not responded . Chloroquine has retinal damage as side effect as well 😧
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Dear Anotherone, sorry they did not answer:/ Maybe because of holidays and you should repeat your letter? Saulius
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hello saulius
May be I should
I have written to them a while ago , well before holiday though - when you prodded me to - so I do not think it is related to holidays. I think I should, I am just so lazy - it is difficult for me to do all the things I should - even before chemo. May be it was because I had cancer already ( must have been present for years before being diagnosed as I had extensive widespread lesions in my chest). Or may be I am just a lazy git 😁
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Dear Anotherone, you are not lazy - you wrote, they did not reply, so they are a bit lazy:) I'll try to write them too still this week. What is clear from the trial NCT01446016 is that they take 250 mg of chloroquine daily but only during active taxane chemotherapy, and also that the trial is completed, so there must be preliminary results. I'll write them too, and we'll see what happens:) Saulius
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thank you saulius
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Husband11 where are you and how are you and your wife??? I hope you are both doing well.
So a friend of mine told me this about ISO Quercetin:
I posed the question about the new form of quercetin to my naturopath who works with Donnie Yance. Here is her answer:
Quercetin works very well orally the way it is. You don't measure the effectiveness of a natural compound by amounts you find in the blood. Bio-transformation causes them to become new compounds. There is great research even on low dose oral quercetin being effective. (End of response)
Also, one of my professional podcasts just talked about this topic. It's important to understand that our gut bacteria do a lot with these compounds that you wouldn't be able to measure by just looking at how much they get into the bloodstream. It's a complex topic but I always rely on my experts to help me wade through it all. So my end answer is you don't need the other form of quercetin though it won't hurt if you ended up getting it. I honestly don't know if the claims they make about bio availability would make a difference in how the compound is used in the gut and how much of that you would need. But no matter what you end up choosing don't worry. I'm sure both supplements are perfectly good!
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Hi everyone. I'm still following this protocol along with I\L. I had my pet scan today and I'm still NEAD!
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Great news, Simone! Keep on going! Throwing the confetti for you xo
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congratulations Simone, I’m very happy for you!
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Frisky\Olma,
Thanks for the Congrats!
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Wonderful news about the scan, Simone!
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That is the way we want it , Simone. Congrats.
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Thanks JFL and anotherone!
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Awesome Simone. Congrats.
Anyone taking MSM here? I am going to add it in I think...I just have to research if it's hard on the liver.
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Wow, dear Simone, that is just great! Saulius
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Thanks Nicole and Saulius! I pray that we all remain stable of NEAD this year.
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JFL & Simone - Is Dr. Mendez still your doctor at COC? JFL, is the communication improving with her? I have been scheduled with her to start the protocol this week. I've been holding off on starting the protocol with COC because I am a patient with Dr. Rosenberg in Florida. My hour long skype conversation with him was very informative. I asked him about every drug I could think of from Turkey tail, Vit. C infusions to the COC drugs and Janes recommendations. He gave me his opinions on everything based on studies. He will prescribe me any of the COC drugs even though he is not a fan of the statins due to side effects and does not agree with taking doxy. My consultation with him was $550 and very worth it. The problem is that communicating with his nurse to refill prescriptions is slow and occasionally I have to send more than one email to get a response. Also, Dr. Rosenberg does not follow what I do; however, I can make additional phone call appointments with him. This cancer business is already so time consuming and frustrating. I don't need to work so hard to get the meds I need. Also, depending on where I am with my insurance deductible, the Meben can be expensive. Plus my insurance only fills 6 days worth at a time. As soon as I get my 6 pills, I have to put in a new order immediately and make another trip to the pharmacy. I hate to fork out another $800 towards COC just to more conveniently get the drugs I want, yet I need this process to be more simplified and feel it may be worth it.
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KarPC my insurance will only do 3 Mebedazole pills at a time...so after I get the 3...a day later they order 3 more...etc...so what I did was...i let them build up till I had like 22 then I started taking them..but I will not take them everyday...I will do 4 days on 3 off and do 200mg a day...because a few people one researcher and a Neuro Oncologist that I contacted both said to up that dose to 200mg...
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Hi KarPC,
I still have Dr Mendez. I have my appointment tomorrow. I haven't had any problems with her, but I haven't really had any questions for her either. JFL had some issues but I think she was able to change ONC. It is very easy to get the scripts from COC. One thing to keep in mind, besides the initial fee they require follow up appointments every three months. Those cost $295. Then you'll get three more months of pills.
I was thinking of requesting an appointment with Dr Rosenberg just because I am tired of researching what to take to block all the pathways. I've seen quite a few posts recommend ing him. Did he provide recommendations for what supplements to take to block pathways? And the recommended dosage?
Nicole,
I believe COC ups the dosage if someone shows progression.
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Yes, I did have Dr. Mendez. She was nice in my initial consult but basically ghosted me after that. No response from her when I progressed. Zero, zip, nada. Not even an acknowledgment that I progressed and should stay the course. She told me in my first consult that she typically ups the dose of the drugs in the face of progression. Also, she told me to hold off on starting the statin in my first consult and then never let me start it. I would email weekly for an update after I uploaded my new bloodwork per her request. I asked various questions along the way about whether the fact that I progressed changes the analysis and whether my meds needed to be adjusted due to progression. No response to any those questions. The only response I ever received was a message two times early on relayed to me by the nurses that said the exact same thing each time "continue to hold off and upload bloodwork". She did not elaborate or ever answer any of my questions. The last straw was that she never responded to my last request about 5 weeks ago. I get the sense the MOs moonlight for $$ and don't really care much beyond the 30 minute consult. Nearing 3 months and still haven't started the statin. I can't deal with that. What am I paying for? Paid $800 for first 30 minute consult with Mendez and just paid $285 or so for my 2nd consult which I have not yet had. I meet with Dr. Zhang next week. My appointment with Dr. Zhang was scheduled for last week but was canceled by the COC the day before, with the nurse telling me he doesn't work on Fridays. Not sure why they suggested and booked me for Friday if he does not work on that day. Since then, I have had a hard time getting an appointment as he only has 11:30pm available all this week and most days. That is not a typo. 11:30pm. I had to tell them that I could push it as late as 9:30pm but that 11:30 was just too late. I am on Eastern time and he is on Pacific. I think I am having a bad string of luck with the administration of this. So long as the meds are helping to delay progression (which is a big unknown at this point), I will deal with the poor administration for now. The drugs are very inexpensive, even though the doctor consults are costly for what I am getting out of them, in my opinion.
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JFL.... they are giving children with brain cancer 1500mg a day...so 200mg for an adult is not even high. From what the researcher/Neuro oncologist told me he said that was his only reluctancy about any of the drugs off labels I am using for the Jane protocol to actually work...that doses are probably all too low...but if they were to be high enough to actually block the pathway for sure...we wouldn't be able to tolerate those doses. The bottom line is some things work for some...and don't for others. I am going to try the 200mg hopefully I can tolerate it
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Nicole,
I just had my 3 month appointment with COC. The MO did say they increase the dosage if someone progresses. So you should be okay with the higher dose. COC is supposed to have some initial results next month posted on how well the protocol is working. She told me it has been good results so far. I'll sure their results once they're posted.0 -
Nicole - Stockpiling the Mebedazole was a smart idea.
Simone - Dr. Rosenberg was a great help. He agrees with many of the drugs Jane recommends but not all. I asked him to tell me what he thought about the majority of drugs and supplements that Janes suggests to block all pathways. He gave me his answers based on research. He suggested dosages based on studies. Nicole, Dr. Rosenberg also feels that doses we can tolerate are too low to block many pathways. He is a big researcher and keeps up with current studies. Dr. Rosenberg does not necessary agree with the metro map and some of the drugs recommended. He does not agree with taking statins and doxy. He is not going to complete the metro map for us, but he will share his knowledge and prescribe what's needed. He will share what he recommends in supplements. After the 1hour skype call with him (about $550), I felt much more knowledgeable about many of the drugs Jane recommends along with other supplements he suggested. I would recommend scheduling a meeting with him.
He also has his own ideas of what works and what doesn't work. He will explain some ideas worth trying. He is a big supporter of TM (tetrathiomolybdate) which is a copper chelator and works by removing copper from the body. Copper has an important role in the angiogenesis process and copper chelation may be used as an anti-cancer treatment. There are some interesting studies on TM. If I had lots of money, I would give it a try. Treatment costs about $750 a month.
JFL - thanks for sharing your experience. I am so sorry you have been ignored. It makes me furious that we have to do so much work to get even basic care. It is nice to know that COC will let you change oncologists though. I hope Dr. Zhang will be much better.
I hope to tweak my metro map soon. I will share it when I do.
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KarPC...the other good thing about stockpiling the Mebedazole is that you can use fenben while waiting to build the pile up. Also...i had my copper levels checked at my ND they were great. So I don't know how well that med would work for me. I will say that I have the DOXY but am leary of it...sooooo many gut issues people have...and I definitely will not do doxy for a month straight (when and IF I use it)...I will probably pulse that like 2 weeks on...2 off. I dropped the Statin and dropped the Propranolol. I MAY go back to the statin..my issue is possible Myopathy....I was having strange muscle pains around the shin area. I just started the LDN 2 nights ago..started at only 1.5mg...working up to 4.5mg....I am still only at 1.5mg night 2. but I had some strange throbbing pain in my head twice the first night, then a mild headache the next day (I am NOT a headache person I very rarely get headaches)...and then this morning like a small kind of dull headache but went away without having to take anything....so I am not sure if its from that. My oncologist actually said yes to the LDN that my ND prescribed because I showed her an article about the itchy skin condition I have (that the Dermatologist in NY said is from my cancer) and in the article it says the name of the condition and it lists LDN as a possible help for it.....
I dropped the Propranolol because I got the script for the DPM (diprydamole) and I really really want to add that in...buy my MO is not on board with that...so I have to ease her in..lol that interferes with Propranolol so since the DPM blocks more than the Prop...I want that.
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Chiming in to say I would like to see the Metro Map for this as well. We can all take away something from this. Thank you ladies.
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I found out that Mebedazole even though it processed in the liver...it wouldn't cause Bilirubin to raise it would cause AST and ALT... Just FYI...
I think the Berberine is raising my bilirubin so I am going to pulse it to 1 week on 1 week off now.
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Some of you may have heard of Chris Woolams -- he's very popular with the Brits, apparently. I learned of him while looking at the forum about TNBC folks in the UK.
You can sign up for his newsletters for free. They are quite interesting. Today's newsletters talked about natural compounds that can fight cancer stem cells, including things like tomatoes, etc. Here's the link to that article:
https://www.canceractive.com/article/top-ten%20nat...
Note, however, if you read all the way through it that you require a huge amount of each of these things in order to have an effect, according to the studies he discusses.
Just passing along for your information.
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Thanks Bev
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Bev, thanks for posting that link.
I had my COC appointment this evening. Just finished up. Seemed to go well. I will be starting statin immediately. The new COC MO didn't see any reason not to start it. Feeling like I am back on track! But honestly, with all the bad press statins have received I am a bit nervous about the muscle issues that statins may cause. However, I will get over that!
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JFL...good luck...yea I think the Statin was causing my weird muscle pains because a day or 2 after stopping it went away. I hope you do just fine on it. Which one are you on, maybe that has something to do with mine?
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Nicole, I am starting atorvastatin, half dose for now. Which one were you taking? Did the muscle pains cause any lifestyle changes (like inability to exercise)
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I was taking lovastatin...they didn't cause me to stop exercising..but they scared me enough to stop the meds because Myopathy is irreversible.....it's permanent.
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Nichole, What tests did they run to diagnose Myopathy? I'm getting worried about the muscles in my legs also. Although it could be a felt-over from Taxol I.V. Hang in there on the Zeloda, Goldie has said it gets easier after first few months.
HUGS
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Snooky I never mentioned I was tested for Myopathy...I said that i was fearful that was beginning because from everything I have read, what i was experiencing was very similar to it being the beginning of that. All I know is...I stopped the statin ...and it stopped.
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Scary about myopathy being permanent. Glad yours stopped. I am feeling more freaked out about this statin - due to myopathy risk and impact on liverbut also feel I owe it to myself to try it because I don’t have a lot of treatment options left.
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Hi. After trying this on my own and guessing on doses, I just started with care oncology yesterday. I have been on metforine low dose and simvostatin but they will be adding the other two. What side affects have others experienced with the doxy and the parasite meds?? Thanks. Over feeling like the rebel but still feel alone in this.
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Hi SD1, I haven't had any side effects with doxy and Medben. I did have an issue with Atorvastatin and am at 40mg instead of 80mg. I am debating on whether to stop the statin altogether.
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Thank you Simone80, hope the 40 works well for you since it is an important part of it. I take the sinvostatin at 40.
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Nicole,
I know you don't take a statin. What are you taking in it's place?
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Simone...I am not taking anything in it's place...because the LD Naltrexone is blocking a lot... I had to just quit everything including my oral chemo due to my ALT and AST being high REALLY high... my doctor thinking its either the Mebedazole or the MSM (if it's not progression, of course) I scan Tuesday and Wednesday.
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Sorry to hear you are having issues. Let's hope it is one of the drugs and not progression. Good luck on your scans and please let us know what they find out.
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Thank you Simone...I will keep you posted...
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Nicole, Have you come across other drugs to take instead of the statins while doing your reseach? My new NP wants me to stop taking atorvastatin. I read quercetin is not good either.
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Simone...I know some people do that Red Rice yeast.???>>> or something...but I have read a lot of research a lot, that says the dosing would never be enough to be like a prescription statin. I did hear of Cholestpure...but again..you would probably need a high amount to equal the prescription statin....
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Thanks Nicole.
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SD1, I haven't noticed any significant side effects from the COC protocol. It is possible it is contributing to some of the overall side effects from Gemzar but nothing I can clearly identify. I had mild, slightly lightheaded headaches the first week or two when I started metformin but nothing since then and no issues when the protocol had me double the metformin dose
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I haven't read the McLelland book but can agree with some of the recommended drugs/supplements listed on this thread. Intermittently and separately I've tried metformin, aspirin, an antihistamine (every spring and more), NSAIDs, curcumin. Did they mention exercise? I would say, combined with intermittent fasting and caloric restriction, you have a very powerful metabolic regulator of our system.
A recent article from the NYT
https://www.nytimes.com/2020/02/17/well/eat/the-be...
and an article from the New England Journal of Medicine
https://www.nejm.org/doi/full/10.1056/NEJMra190513...
about the benefits of intermittent fasting.
(I subscribed to the latter for 3 free articles a month.)
The articles are not specifically about cancer but it does get a mention.
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The good news is that my of my 2 bone mets...the one in the hip isn't even visible...and the one in the sacrum is has shrunk on Xeloda.
now the bad....
My liver supposedly had 3 tumors but 2 of them had been cryoblated in end of Oct 2019. They were cryoblated under 1 dome (together).... well today the PET and MRI showed that it looks like I have 2 or possible 3 tumors...here goes....Please try to follow me here its gonna get confusing..
A. The (2 they cryoblated) looks to be gone the PET shows minimal if any uptake but the MRI shows it bigger, but they admitted they are not familiar at my facility with Cryoblated tumors and are not sure if this is actually dead and smaller so we have to wait for the IR from Hopkins that did it to look at it...my husband believes its a non issue because they said the same things about it when I had a CT scan 2 weeks after the cryo and it turned out when the IR at hopkins reviewed it he said it's all good and dead end. of. story. So hopefully its still like that.
B. That left 1 tumor...the one they couldn't get with cryo bc it was too close to the colon wall...that looks bigger..but we don't know if that is because it grew in the 2 months I was off all meds before I started the Xeloda which would actually mean it is stable.
C. There is a new tumor near the one they couldn't cryoblate...but again..we do not know if that was there during that 2 month period I wasn't on any meds before starting the Xeloda..and there is a good chance it was because when I consulted for the Cryo the PET I had (from a different facility) said I had 4 tumors in liver....that the 4th one was new from Ibrance failing...yet the IR said NO..there are only 3... HRMMMM now they are seeing a 4th??? ughh so we are unsure again...if this was there or is actually new ....
So we sent the MRI to the IR to speak to my MO directly and tell us what he thinks about the cryoblated area.
In the meantime we are going to do Xeloda for 6 more weeks and scan on week 7.
If I am stable we stick with it. If I have progression we are going to move on to either...:
Paxitaxil> spelling....
or
Doxil (which I asked about bc I heard its easier on the body than the taxmen) My MO is open to both but would prefer starting with the Taxane..because she wants to hit this hard to set it back then is open to Doxil.
We are also looking into a immunotherapy trial.... but right now it's looking like I will have to choose between the 2 chemos and I want your opinions... and before you ask yes I will find out about more cryo but the location is right by the tumor that is by the colon wall which they couldn't cryo.....j
PS - liver numbers all good resuming LDN!!!
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Hi Nicole, that does sound confusing. It does seem that xeloda is doing something positive for you. Sounds like the next scan will really show if it's working.
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Simone my concern also is that I will technically only have 3 weeks of the oral chemo in me when I scan...since its 1 week on 1 week off.... I just feel like how can that possibly be enough chemo/time in me 3 week and see if its working
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Nicole,
Good point. 6 weeks doesn't seem long enough. Did your MO explain why 6 weeks instead of 12?
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Nicole, I agree, you may need longer on the medicine to make sure you give it enough time to work.
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My MO is afraid to wait any longer than that...because IF those tumors grew in only 2 months what will happen in another 2 months? Some people say that the oral chemo keeps working in the off weeks...but I don't know...?
I guess my big dilemma is if it fails do I go to Doxil...or Paxitel....I just don't know what to do...I am sooo sooo torn...I feel like I just cannot decide which one...
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Take a look at my old post on oil of oregano and my wife's experience.
It must not be taken with other drugs. It is highly prone to interefering with drug metabolism.
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Thanks Husband...looked it up.
Has anyone tried Astaxanthin.....
I am ordering this one... https://valasta.net/product/valasta-oil/
Any thoughts?
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That looks very interesting Nicole. How did you learn of this? The "petri dish" and rodent studies are certainly promising.
Breast cancer cells in vitro: proliferation and migration halted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC62106...
Does an anti oxidant interfere with chemotherapy? An in vitro study with astaxanthin and breast cancer says no.
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Everything and everyone that I have read about on it...while on chemo says it does not interfere..but...ya know I am worried about the "anti oxidant" aspect... sigh. I heard about it though a friend (nothing to do with breast cancer) ...the other intriguing thing is that it is HIGHLY effective against PDL1...and I have that mutation.
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UPDATE....
The MO just called. Since the radiologists did not have an MRI recently to compare they only have the PET so she wanted the IR to have a look and he did.
The IR said the cryoblated area looks good and as it should. He thinks after looking at all scans that the 2 tumors (1 that he didn't cryoblate and now the one right next to it) have grown and he would feel better if I moved on to IV chemo... he said he could do TACE but it can be very painful (as you know BEVJEN).. My MO prefers chemo IV...so my decision now is whether to get the IV Chemo Doxil or Nabpacitaxol.... or to stay on the Xeloda for 7 weeks...even though now I have been off it for 2 weeks...but re started today.
I am just so torn.
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Nicole,
So sorry to hear your update. I'm not sure what to say. I would want to squeeze as much time on a drug as possible but yet wouldn't want my tumors to grow more. I see you're grade 3 so those little buggers will grow fast. Maybe someone who has taken those chemos will chime in.
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Thank you Simone...right now TODAY....I am leaning towards giving the Xeloda the 7 weeks...because:
1. I want to try adding the Oil of Oregano (like Husband11 wife did)
and
2. I also just ordered Astaxanthin and want to add that....
I need to pray about this....hard...because I need our Heavenly Father to close the door on treatment He doesn't want me to do and what He does...and I believe that He does and can use other people to lead us where He wants us to go...and I am praying that with all of you He is going to help shed some light for me. Even if I do not do the Xeloda or I do for the 7 weeks...I still will have to choose between the doxil or the nabpaxitel....
Thank you so much for the PM's from Saulius!!!
JFL would love to hear your thoughts....
Also hoping that Cureious will chime in too...
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You are in my prayers Nicole. And yes you are so right, we need God to guide our decision making, to help us make the right choice. Can you remind me how long you had been on xeloda prior to the imaging that showed the second tumor? Obviously you need to determine whether the xeloda was working or not, and that will to some degree depend on how long you were on it prior to the scan that showed things worse than the last scan. Did the pet scan give any feedback as to the uptake in the second tumor?
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Husband11...thank you so much for holding me in prayer! Ok so my report has not been uploaded to portal but I will let you know uptake as soon as possible. Heres the thing.... Lets leave the 2 tumors that were cryoblated together, out of this.
With that said that leaves 2 tumors:
October 2019 - PET (this PET had let them know that I had growth while on Ibrance and stopped Ibrance) They reported to have seen 4 tumors in liver. (2 of those I then had cryoblated)
December 2nd, 2019 started Xeloda
December 4th, 2019 - CT Bone and CT Liver this only shows 1 tumor not 2. (My Bone Mets do not show on CT or Bone CT either)
We now know the other tumor WAS THERE on December 4th they just did not see it on CT Scan either it didn't show or was too small to see on CT. They saw it on October PET and on February 2020 PET.
NOW:
- 1st Tumor we know was left there when I had cryoblation (and from the beginning when originally diagnosed) that one got bigger.
- 2nd Tumor (or 4th if you count the cryoblated ones) grew from OCT. PET 0.6cm to now 1.0cm
Our question was: did they grow from Oct to December when I was not on any medication?? Or did they grow on Xeloda (started in December)???? My MO spoke to the IR last night and he feels they most likely grew on Xeloda based on looking at all the CT's PETs MRI..etc.... don't ask me why he felt that but he did.
One more thing...I don't know why ppl say that MO's don't admit when chemo fails it comes back with a vengeance and that MO's don't admit that chemo doesn't kill stem cells...Mine does. She said to me at the meeting Friday... I said "why if I get NED on Nabpactaxol can't we stop it and just do nothing and see if the cancer comes back why do I have to stay on it till it stops working?" she said "because when the cancer comes back...it does so with a vengeance"..... and when I first consulted with her...I said "I want to do some alternative therapy with conventional because chemo does kill cancer but it does not kill cancer stem cells"...and she said ..."correct".
So as soon as I get the uptake info I will let you know....
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Nicole, keep in mind that chemo not only doesn't work, otherwise they wouldn't have a 98% fail rate, but it will destroy whatever is left of your working organs: kidneys, liver, gallbladder, and must of all YOUR BLOOD....making it hard to want to live as those problems greatly affect your QOL. After 4months on doxil my skin was dropping off leaving open wounds....you can't make this stuff up! This phenomenon happened also to Shetland after just 2 sessions...I rest my case...
I was on a reduced schedule of Navelbine, but I nonetheless find myself with hemoglobin at 7, it should be 14!! At 7, you will feel as if you belong to the other side...
It's a cruel disease, but the “cures" are worst than the disease....catch 22
I hope God guides you well, but it's ultimately a crapshoot, mos don't have the energy to recommend medications because they know it doesn't make any difference whatsoever!
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Frisky, I am sorry you feel horrible that really stinks I hope you can find an better treatment. I have to say your post sounded very negative and I just can't go there right now. I have to be honest not everyone has the issues physically way you do right now. I have actually met many many women in the past 2 days that have zero issue on Taxol...not even Doxil..but Taxol...they actually said aside from their hair falling out they felt a little tiny fatigue and that was it.
I believe all our bodies are so different and some people do very bad and the easiest drug and some do great on the hardest we just never know. Look at me ...mebedazole sent my ALT and AST through the roof..and yet others don't even know they are on it...I seem to be great on Xeloda and yet some people have massive hand and foot syndrome.
I also believe that we need Conventional therapy with unconventional therapy. Chemo kills cancer there is no doubt about that its a fact that doesn't mean it NEVER comes back because it can and will....what it doesn't do is kill cancer stem cells. thats how it comes back we need to kill the stem cell (which is what causes metastasis) hence> alternative off labels. As far as MO's recommending stuff...I picked a Medical Oncologist NOT a Naturopath....so of course she is going to recommend the conventional therapies that are commonly used to treat my cancer that is her job and what I expect her to do...I don't get upset or mad because she is not recommending some alternative therapy to me...the most I do is share with her what alternative therapy I want to do and hope she is in agreement. I happen to love my MO and I believe she wants to save my life if I felt any other way I would get a different doctor...and if you feel that way you should look for a new doctor one that you feel is fighting WITH you and FOR you.
Everyone should try to get that and stop at nothing less.Even though I know you are doing conventional therapy it sounds like you don't believe it works. If you think conventional therapy is making you feel that awful why not just try unconventional/alternative therapy? I know you have done a lot of research on that with Jane & Joe's books etc and natural herbs etc? That route might work better for you? Either way I hope you feel better.
I don't want to hijack the thread so please feel free to pm me
PS if you haven't yet you should look in the the powerful antioxidant I mentioned a few posts above
Could be a game changer for you 0 -
Nicole- In your comment you indicated you have PDL1 expression? How do you know that (Foundation One, etc?) and PD1 expression is also high? If so, I would want to include an immunotherapy with the chemotherapy, because if you are a responder it could make a large difference in the response. What does your MO say about adding Keytruda?
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Frisky, you are also in my prayers every night!
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Thank you Husband...I'm going in for a blood transfusion soon...
Nicole, I wish you and everyone well, and I agree with all you've stated BUT 98% fail rate remains a fact, and I believe that as we fight to stay alive, it's important to look at the reality of the situation, since my predicament is actually very common, Divine went in for a blood transfusion yesterday and everyone else is going in and out of emergency rooms.... just saying....
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Curious...I have the PD-L1 expression it was on my original (and only ) foundation one report from April 2019. My MO and I have discussed trying to get into immunotherapy trials based on that and I just today sent her a list of trials I would be eligible for that I got from The Cancer Research Institute...
Curious I will PM you...incase you don't check back here...but if you do...when you say ask her about "adding" keytruda...do you mean to Doxil and/or Nabpactaxol (which ever we do)?
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Ok husband11 here it is...:
Hypermetabolic anterior right hepatic lobe mass perhaps increased in size approximately 2.1 x 1.8 cm previously 1.7 x 1.2 cm (3.7 x 2.3 cm on 12/07/19). It has maximum SUV 3.0 probably decreased extent and similar intensity. Previous adjacent focus not seen. Inferior right hepatic lobe mass increased in size 2.3 cm in transverse dimension previously 1.4 cm (1.8 transverse x 2.4 cm AP on 12/07/19). It appears more intense with maximum SUV 4.8. Anterior and just superior to this mass, there is a new mild hypermetabolic focus maximum SUV 2.4, liver parenchyma 2.0. This probably corresponds to 1 cm hypervascular lesion on today's MRI.
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Nicole, sorry to hear about needing to switch treatments. I responded in the liver mets thread to your question about what others would do if they had the choices you have, based on my experience with Abraxane (nab-paclitaxel) and Doxil.
Curious raises an excellent point about Keytruda (with either chemo) or possibly Tencentriq (with Abraxane) given your F1 results. These can be given off-label if insurance will approve it
OK, I am now going to check out the info/links you posted on Astaxanthin now! I haven’t heard if that one.
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Thanks JFL I replied over in Liver Mets..but thank you so much for giving your opinion about that you would choose Doxil first. Wondering if you choose that over a combo (like curious) mentioned?
Yes the Astaxanthin looks to be very good...and it specifically targets PDL1
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Nicole, can you ask the oncologist about interpreting the uptake SUV values on the pet scan? Can anything that remotely resembles a response to xeloda be gleaned from that description?
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Nicole,
My PDL 1 was low it had a value of 19 on my Strata testing, no other mutations and negative for all the genetic testing. Do you know what that means? My MO hasn’t gone over it with me just said I really don’t qualify for any clinical trials because I just started on IBrance.
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imagine ..I would say she says what all MOS say with relation to Ibrance they want you to try that first...bc if it works well u can get years on it
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husbamd11 apparently not she not only looked at it for 2 days but had threIR have eyes on it and spoke to him personally
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Nicole,
FWIW: I would stay on Xeloda for 7 weeks and then have the immunotherapy/chemotherapy lined up next... In reviewing your results I didn't see the SUV increase to be in a "panic" mode, although concerning. It's definitely a conundrum, however I'm sure you'll make the right decision. Good luck.
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Imagine,
Is the info you posted from a Foundation One report? You can read all of the backup on the report (you yourself should have a copy, so ask your doc for it if he/she didn't give it to you). If I remember correctly, there might be some sort of a tel number on the report to ask about the report too? Or I may be hallucinating about that. I just sat with the report (especially the cover sheet) and slowly but surely went through the whole thing so that I could have a handle on it. I wouldn't say that I understood it all, but I understand enough so that I know where to go and look for more information.
This raises another thing that no one has mentioned for a while. In this age of patient portals, I don't think many of us keep our own print files of our medical records. But it's not a bad idea. Also, every time you have a scan, it's worth it to ask for a CD of the scan. If you want a second opinion from anyone, they are going to want it. It literally takes your imaging center a very few minutes to burn a scan and print out a report for you, and they will not charge you for it (at least for the first copy)
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Dear everyone... Chemotherapy kills fast dividing cells (just approximately true because there are many mechanisms), and none of the professional doctors would say anything else. Chemotherapy does what it has to do and does nod do what it does not have to do. Therefore we have chemotherapy combined with targeted therapies. First one - to lower tumor burden, second one - to work on stem cells. Then there are surgeries, local treatments, modern diagnostic tools. In that sense there's no more effective treatment known to human kind. Everything else is mostly speculations or separate cases, some random initiation of immune system that cause radical remissions. Simply to say, some people were lucky to find treatment for them but they don't know why it worked, as conventional medicine is trying to crack a very hard task: to give treatment to everyone. It is great when we can add our share and these modern treatments work in synergy with supplements, I believe one day that will play a big role too. Modern treatments do not fail, not at all. BC stage III 20 years ago was a death sentence, and now has over 50 % cure rate. Modern treatments do not fail, they just are getting ready for stage IV. It is the ultimate target for science and medicine. Some cures (let's not discuss the meaning of this word) already started to occur, although in very small numbers, but it takes time to confirm them. I am sorry that you (and I, partially) all face this dreadful disease but we can treat it, and with the help of the Almighty and luck, maybe we can also cure it. Remissions are possible. Prolonged remissions too. We are getting close. Too slow, I agree, but we are getting there...
Saulius
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Saulius...thank you for your positive input . I agree 100% with your post and I said much of the same thing (minus the statistics, in my previous post).
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Thanks Nicole, I will have my wife check on your batch and see if its from those recalled.
Edit: It turned out that her metformin was in fact one of the recalled batches. She took it back to the pharmacy and they replaced it. If we hadn't found out through you Nicole, she would have continued to take it.
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Positive BC post on FB Janes protocol:
Positive progress!
Yesterday had an ultrasound scan of my liver only two "baby" tumors left. 11+/- mm. And as you can see one baby tumor it's encapsulated and calcium deposits in the centre shows its healing.
In September 2017 I was diagnosed with aggressive stage four breast cancer. It had spread to my lymph, liver and spine, with too many tumours to count.
The NHS gave me two years to live, telling me they couldn't cure my cancer, only that they could delay the inevitable worst parts of it.Been doing metabolic approach to healing. Key point is I have had No chemo, no radiation and no surgery. Discovered Jane's book last December 2019 now on COC program.
Just about to add hydrochloroqine to the repurposed drugs cocktail.
Circulating tumor cells at last in November liquid biopsy were down to 4.1. so getting there.
Hope this encourages all of you. Keep going! No short cuts to proper healing, but this metabolic science approach works!!!
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Thanks for posting that Nicole. My wife continues with here COC protocol. The Doc mentioned there is a shortage of mebendazole, so they are having to leave that off the treatment plan for Americans. We are not sure of the state of supply here in Canada. Funny thing was, when I mentioned Fenbendazole to the COC Doc, he said get it if you can. Hmmm. I didn't want to press him on it further, but that sounds like an endorsement to me. His hands are probably tied because its not a human drug.
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How can they leave the mebendazole out? I thought it was a critical part of the COC protocol?
There are other "azoles" that have been used on humans -- albendazole (sp?) comes to mind. Curious that they wouldn't sub that one in. And also curious that the doc seemed to endorse fenben.
Wonder if this is a created shortage crisis by big pharma?
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I have read that a number of the drug companies have capitalized on the need for anti helminth drug, which are typically very short term use, and really jacked up the prices. As a result, smart Doctors are substituting other drugs in the same family that have not yet had the prices jacked up to extortion pricing. If my wife can't get mebendazole, I think we should switch to fenbendazole. Its still cheap and available here. $333 for 450 grams of it, or $7 for a packet of 5 grams.
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Husband,
I am just about to pull the trigger on starting COC -- just waiting for my appointment next week with my interventional radiologist and having a liver MRI for that appointment. If the recent CT is indicative, that will mean I am "continued stable." I think it might be a good time to start up on the COC protocol, rather than waiting for bad news and then trying to start it.
I am going to be in the UK later in March, and I just looked it up -- mebendazole is available there without a prescription. Thinking of trying to stockpile some so that if I do start up the COC protocol, I might be able to use the mebendazole rather than the fenben.
Perhaps mebendazole is still available in Canada? It will be interesting to see. And yes, it's got to be the drug companies noticing the trends.
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My wife will be going to the pharmacy that she obtained the mebendazole from last time, and checking to see if they still have it available.
There is some variation in the way COC is "delivering" the medicines. At first appearance, they said they would supply all the drugs. However for us, and we liked this, they simply provided us with a prescription. That is fine, because my wife's meds are covered by her insurance. As long as the drug was available, we were all for getting only the prescription. I did get a message from COC saying they were now going to be shipping the drugs to Canada. I'm not sure if that covers all provinces, as oddly, COC isn't, or at least wasn't, available in all provinces. The COC we get in Canada, is run out of the US centre. So was it an issue relating to having someone in the various provinces to actually write the prescription? We will find out whether we get the drug or the prescription in the next couple of weeks. However if it is the drugs, it won't include mebendazole according to last nights consultation.
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That must have just happened. I received my shipment last week which included medbendazole.
BevJen, I think your right about big pharma. They are probably trying to drive up prices.
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Good to know you got it Simone. I like the COC people, but their information about how and what is being delivered is a bit mixed up. We spoke to one person who swore up and down it was going to be shipped, even specified how, and we had never asked for a prescription, but then they sent a prescription for us to fill.
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I wasn't aware that the COC was pulling back on mebendazole either. My last shipment included it. I hope this is a temporary thing.
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Nicole- Fantastic news for you, and its wonderful you are encouraging everyone on!! I remember when you first came, can it already be more than two years ago?!!
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Our lovely 12 yo dog, Minxie (cocker- Shitzu mix), came down with an aggressive anal gland cancer- they removed what they could surgically, but it returned with lung mets last August, and the vet sent her home to die, that they could do nothing more for her. He said chemo would only give her maybe two more months and would make her so ill. She had great trouble to breathe at night, hyper panting, and we had to give her water multiple times in the night. Based on all the discussion on this site, we started giving her fenbendazole- because it has solubility issues, we mixed it in a tablespoon of soft butter, and to hide the smell we put the soft butter in a little ball of cream cheese.
Totally worked! She is lying right here beside me now. At first we just hoped she could be here to see the kids when they came home for Thanksgiving, then Christmas. Mid-January we decided its enough and we didn't want the cancer to become resistant to it, so she's off the drug for the moment, and we will give it to her when symptoms return.
Based on the recent report from MIT that NSAIDs can block chemo-resistant cancer growth, we will add in some doggie anti-arthritis drug with the fenbendazole if we get to a point where the fenbendazole alone does not work. But so far, excellent results and she has not had any problems taking this drug, never got sick with it or had any problems that we can tell...
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That is great Cureious!
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OMG cure-ious....thatsuch a wonderful story! I'm so very happy for your dog, you, and your family! please keep us posted....
Just wondering...how did the vet react to this development? Was he interested in what you did or mildly amused?
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Curious I am so happy for you and Minxie. Would you now consider taking Fenben? X
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Cure-ous so happy about your doggie. Actually it's been 1 year now for me (but I know I had my cancer, stage 4) for a year before being diagnosed due to the pain in my sacrum and hip.
I have decided to stay the course for the 7 weeks with Xeloda. Though I am kind of convinced now that it is not working...I have begun having pain in my liver again , not where the cryo was but down low where the tumor he left and the new one are....and I am not on any supplements so I don't think they were doing it. With that said...I want to re-start the LDN or MSM. I got blood work done today I am pretty sure the Bilibrudin will be high again....
I am looking into some trials...but next step will probably be Napataxol > spelling or Doxil.... then if we can get NED we may look back at Endocrine therapy...
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Curi-ous,
That is great news on Minxie. Thanks for sharing.
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Thanks so much to y'all, we are thrilled for our (not so young anymore) baby, who was just running to chase her ball and hanging out on the balcony waiting for other dogs to go by on night walks and bark, her favorite things. She has had many fabulous meals and walks in the park. The vet actually does not know what we are doing with her, and at some point I will go back in and discuss it. She had multiple symptoms, not only the great difficulty breathing and excessive thirst at night, but also bloody mucous-y poop, and those are gone for the moment, although she has certainly lost a lot of weight. I would just love to get her back in to the vet for a scan, but we have to pay for those and its too pricey. They just told us to come back when we are ready to put her down, and yeah, that ain't happening at this point!! No evidence for any pain, but definitely more frail. Thanks for your support!!!
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Cure-ious what a great story....it should be published in some canine publication. It could help other pet owners...
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Info re dipyridamole- doctor from prescribing clinic said one should take at least 2 capsules ( 400 mg in total) a day for the effect. As I have crushing headache from it and as there are no smaller dosage medicinal forms of it that one is going to be a miss for me.
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Feeling good about the (finally complete) COC protocol I am taking with Gemzar. I think adding the atorvastatin, finally after switching doctors from the non-responsive one who refused to let me take the statin, really is making a difference for me and I am only at a half dose. My tumor marker (CA 27-29) that actually has been tracking pretty well with my progression/regression the last few years keeps going down and is normal range and lower than it has been in a very long time. CA 15-3 is always in normal range and hasn't been tracking with progression/regression at all the last few years although it did in the beginning. I am overdue for a 3-month PET scan but am going to put it off a bit more so long as my bloodwork looks good. I don't really have a lot of options left to be jumping off meds quickly at this point anyway. I believe that ER+ cancer uses the fatty acids pathway. Maybe I really needed the statin to complete the puzzle. Hoping COC protocol will give me a bit longer on Gemzar. I also think being on the COC protocol when starting a new med helps as well so that the initial attack is more powerful and less catch-up work to do.
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JFL,
It's good to hear that your TMs are better. I was wondering how you were doing. I had to stop the statin. My NP is treating me for Lyme disease and he didn't want those drugs being interfered by the statin. I am looking into other alternatives and going to ask him about citrus bergamont. I believe your right about er+ using the fatty acid pathway. I recall reading an article that cancer in the lymph nodes will use that pathway and I had 3 lymph nodes that were cancerous.
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JFL i am so happy for you!!!!!
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JFL,
Wow. So happy that your numbers are looking better. Great news.
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That is great to hear JFL. Did the numbers start to drop after you added the atorvastatin?
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Ok people....after a lot of research for trials...my MO just wrote to me here is what she said.I had sent her a trial or a couple to look into for me 1 at Duke and 1 if you are PIK3CA positive. If you all have any input I welcome it with open arms...
(just a side note...I am still on Xeloda till scans April 13th...I have added in Astaxanthin, but not the kind from amazon... this powerful one (I will link below) I personally know someone that had mouth cancer and after taking this they literally watched tumors puss and dry up!!! also Astaxanthin kills PDL1!!! and I have that mutation)...Also Astaxanthin is safe with Fluorouracil chemo (which Xeloda is) so after much praying I have decided to take the Astaxanthin WITH chemo no breaks...this was a very very big thing/decision for me to make and I prayed a lot about it and while I still do not feel 100% about my final decision I am doing it....the Xeloda didn't show any promise on my liver mets so I am praying this could be the thing that makes work. https://valasta.net/?fbclid=IwAR1gtTbHrH635Jyz9fIk1glmvbYDBHGtIGedLkmhbsMXzD-cr59g7ltoX68
Here is what my MO said: I will put some notes of mine next to her responses in BOLD
Hi Nicole,
I have looked into a bunch of clinical trials at Hopkins, Georgetown, Virginia Cancer Specialists, Inova, and the ones you sent me.
A few answers: you are PIK3CA negative (both tumors that were tested actually, the one from 4/2019 and the one from 10/2019).
NCT04197999 - phase I at duke. First in human trial combining it with endocrine therapy. You can't do this as you can't be on just endocrine therapy.
Retrying the CDK 4/6 inhibitor - so this report was in petri dishes and mice, so not in humans yet. I would not be opposed to trying you back on endocrine therapy in the future with abemaciclib (a different CDK 4/6 inhibitor) - however would prefer to wait and do something that I know would work now given the likely progression in the liver. This would certainly be risky since as of now, this would go against standard of care.( I sent her a article about how if you fail on CDK 4/6 ..that after a break from them they can be revisited and work)
Hyperthermia is being used in select cases when regular radiation would not be appropriate. However this is still just a local therapy. I feel like we need systemic therapy right now - ie a drug switch. ( I asked her if I could do hyperthermia but then I personally spoke to the guy that does this hyperthermia and he said they are NOT doing this on liver tumors yet so I cannot do it anyway)
Hopkins and Georgetown- none that I can see you being a candidate for. I have an email out to a doc at each of these places to double check
Virginia Cancer Specialists have TROPICS2 trial which it appears you would be a candidate for after another line of chemotherapy, but can't go on it now. So if we do Doxil and then you progress, this would be an option. The drug they are using seems very promising in other trials.
Inova - we don't have anything yet for you as you are not a candidate for the EMERALD trial, however we will be opening another trial in the next couple of months that is endocrine therapy based with a new drug plus abemaciclib which we could use.
My preference at this time is to start with Doxil chemotherapy after your next scans. I think that is a great option. After that we can do clinical trial or try the abraxane.
We can talk about it more at your next visit,0 -
Nicole, so it would appear that none of the clinical trials you suggested, nor any of the clinical trials the Oncologist has access to, are open to you? Please correct me if I am wrong in my read of what was written.
So the only options are between which conventional treatment to pursue? IE Doxil vs ????
Or, re-trying a cdk4/6 such as abemaciclib?
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Husband. Yes...none of the current trials are available to me. Now...if I do the doxil and fail..then I will eligible for the TROPICS2 one with Virginia Cancer Specialists as you need to have failed on 3 lines of treatment or Chemo type drugs.
So basically she is saying she is totally ok with doing Doxil next and not the Abraxane (but she would be fine if I CHOSE to go with abraxane first) So basically if the Xeloda fails...we will go to Doxil and if that fails then I am eligible for the TROPICS Trial and also this we will be opening another trial in the next couple of months that is endocrine therapy based with a new drug plus abemaciclib which we could use.
So those would be my 2 options...she is definitely open to re-visiting an endocrine therapy drug (which I am happy about)but only after we try an IV chemo which I also agree with. I am just really happy she looked into all of that for me. To me, that says a lot about her.
I was very torn whether to go to Doxil next or Abraxane....I do still feel Abraxane would hit it hard and work better but I THINK now...I would rather try the Doxil and if it fails be eligible for those 2 trials. The one TROPIC and the one at INOVA.
Still praying though that the Xeloda and Astaxanthin will work...though I can continue with the Astaxanthin on Doxil because its also a Fluorouracil chemo. So to me...that sealed the deal about sticking with Astaxanthin on Xeloda and to go to Doxil so I can take it with that too. The ONLY ISSUE with doxil..its HARD on the liver and she told me that...she said she would have to start at a lower than normal dose because my liver gets funny when too much is added in (ie: supplements with oral chemo off labels with chemo etc)
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Is there a reason why if you tried Abraxane, and it failed, that you couldn't do the Tropic trial? Not that I have any knowledge of Abraxane vs Doxil being superior in any way.
What's more tolerable, Abraxane or Doxil? Why (and not questioning, but just wanting to learn) does she prefer Doxil?
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Personally if I called her right now and said "I want to do abraxane" she would be like "YES come on in!!!"...I think she is leaning towards the Doxil for me...because when we were talking IV Chemo last visit (before we decided to give Xeloda 7 more weeks) I was saying that I have to travel to Long Island every month FEB, March, April and May..and Abraxane is every week for 3 weeks in a row...1 week off..and I asked how she felt about going to Doxil first...and she said traditionally they would go with Abraxane first then onto doxil....but she would be ok with doing it the other way around..that doxil is easier. So I "think" she said Doxil first because she thinks I would prefer that.
My family and friends want me to go to Abraxane first...but they don't understand...my MO will not stop Abraxane till Abraxane stops working...I just don't know that I want to go to that YET..... I am actually having high hopes for the Astaxanthin with the Xeloda...I feel like I didn't give the Ibrance/Letrozole/Faslodex extra time and I should give the Xeloda that...7 weeks is nothing...I only have 5 left....
Husband, just curious.... you would go to Abraxane if the Xeloda failed?
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I don't have the knowledge to choose between abraxane and doxil.
Is doxil easier because of the scheduling, or is it less side effects?
I read recently about an oral abraxane, but that might still be experimental. They said it would have less side effects. You had to take some drug first on an empty stomach, then an hour later the oral abraxane.
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this may have been posted already -
https://www.frontiersin.org/articles/10.3389/fphar.2019.00681/full
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According to an email I just received from COC, there appears to be a new medication they are adding to some or all patients. It says to ask about your eligibility during your next meeting. Anyone know anything more?
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they just added flarin (I think it is a form of ibuprofen which does not irritate stomach too much) to my prescription.
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Hrmmmm Interesting...I guess that is an anti inflammatory.... See I believe we NEED THIS!!! I believe specifically for me my cancer feeds off inflammation - primarily (I know I have said this before)....I cannot wait to get my blood work on the 19th because I just NEED to start adding back in either the LDN or the MSM for this exact reason!
Anotherone thank you for letting us all know about that!
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Husband Sorry I didn't answer your question... doxil is easier because of both...Side Effects and you only get it once a month.
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Sounds like Doxil would be a decent first choice. I personally wouldn't go right away to the harshest treatment, even if it had a better chance of working. Why forgo something that might also work and leave you not feeling as bad? That's why my wife went with xeloda over IV chemo, and she was glad she went that way because although it was supposedly had less chance of working, it worked.
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Thanks Husband!
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The more I become familiar with the repurposed drugs and supplements Jane recommends, the more I see positive studies about her recommendations. While I am most interested in the relevant studies about cancer and the use of repurposed drugs, it's interesting to see some of these drugs come up as potential inhibitors of COVID-19.
As we know from the news, testing is being done with chloroquine / hydroxy-chloroquine as a potential treatment for COVID-19. Jane recommends chloroquine / hydroxy-chloroquine for Macropinocytosis (Autophagy) on her metro map and for Abnormal Cell Signaling (toll like receptors, EGFR epidermal growth factor receptor).
In addition, a new study suggests that curcumin, quercetin, EGCG (green tea extract) along with other supplements/repurposed drugs may inhibit COVID-19.
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KarPC what you said is all very true...but KNOW this.....chloroquine is VERY VERY VERY hard on the liver. So those with liver mets will most assuredly have raised enzymes and possible inflammation so much that they probably wont be able to tolerate it.
The ONLY problem with Janes protocol from what I am learning from Oncologist who is totally on board with it and from others...is that the dosing that MOST of us would need for the off labels to make a difference is so high that our bodies wouldn't be able to tolerate it. I say this MOSTLY with regards to Stage 4 specifically...and NOT about Stage1 , 2 or even 3.
This doesn't of course include something like Metformin...or LDN...though...once we start taking more than 2 or 3 drugs/supplments are liver enzymes tend to start climbing...
Just my opinion and what I have learned over the past 8 months seriously researching this.
Am I still gonna try to take everything I can...HECK YEA>...lol we gotta try right?
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I would like to know more about the risk of damage to the liver from these drugs. Is if safe for a patient with liver mets to take them? My wife's liver values are elevated since starting COC. They have told us they don't think its from the COC drugs. Sort of reassuring, or not. Its a big act of faith to rely on them and their expertise in knowing how these drugs interact with standard therapy.
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Husband I took 5 days of the Mebedazole..and my ALT and AST which were 34 and 39 NEVER EVER elevated went to 230 and 300.....I stopped it...and in a week back down to 25 and 27
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That's scary about your ALT & AST numbers elevating like that Nicole. I am glad you figured out the cause so quickly.
I am also concerned about how the COC drugs could be hard on my liver. After a few months of taking the COC drugs plus other drugs/supplements which Jane recommends (and hydroxy-chloroquine), my AST and ALT have stayed in the normal range. However, my ALT and AST have always been in the normal range even though I have liver mets, so I may not be a good example.
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My ALT and AST were ALWAYS normal...only after taking all the supplements...and off labels and chemo...did they elevate and specifically when the Mebedazole was added..and I have now had 2 doctors tell me that all the antibiotics that end in "zole" > hence mebedazole all can be hard on liver.
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Nicole. I forgot to mention how I stop taking the protocol 3 days before I get blood work. Maybe my ALT and AST are elevated during the protocol and then return back to normal within days like yours did.
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You guys have mentioned a very important thing that needs to be addressed every time: control. Use the drug but control your blood/liver/kidney numbers, etc. That is a feedback, a very important component in treatment. I would also recommend to use supplements in cycles (x days on/ y days off), unless it is very well known that they do not cause anything. Saulius
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good idea Saulius.
Kar...it took my numbers 2 weeks to get normal the were dropping but slowly. Do you get blood work ever 4 weeks? I get it every 2 weeks so for me to stop 3 days prior I would only be on it 4 days a week ..every week. I dont think that would be anywhere near enough to block a pathway.
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Nicole, were there other COC protocol drugs that you were also on? My wife is doing the COC with alternating months of mebendazole vs the antibiotic, continuing statin and metformin continuously. Her liver values have also jumped alarmingly, but not as high as yours. She also has mild ascites now.
No growth of the cancer, but an elevation in the CEA. Rather disappointing results from 3 months on COC. She was previously stable, so we can't say the COC did anything positive.
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Husband...I was on...:
Melatonin 20mg
mebedazole (just 5 days 100mg)
MSM 750 mg 1 x a day
Vit D3 4000 IU/day
Vit A & K (not sure of amount but not high)
Magnesium Citrate 400mg
Magnesium Malate 150mg
Low Dose Baby Aspirin
Low Dose Naltrexone 3mg
Probiotic
Xeloda
Claritan D
Metformin
Berberine (every 3 weeks off 2 weeks)
Now to be clear...I have for the past 10 years taken 2000IU/Day Vit D3 and 400mg Magnesium (so that definitely had nothing to do with the levels.
I believe the Mebedazole was the BIGGEST culprit...but...the LDN and Metformin and of course Berberine can be very hard on liver too...so I think I was just taking too much with the Xeloda... I am going (after tomorrows appointment) add back in either the LDN or MSM...I am SOOOOOO torn about this. One of them was really reducing any joint pain (prob the MSM for that) and Inflammation... (prob the LDN)....so I have to make that choice...after I add one in I will wait 2 week or 4 then add in either the Metformin or Berberine....
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My wife had been on metformin for 5+ years, maybe even 8 years.
She is going to quit the COC protocol and just stick with the tried and true formula that was working for her, ibrance, letrozole, metformin and maitake D extract.
Something is raising her liver value, her CEA, and causing bowel problems.
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Husband11 How is your wife's liver numbers now? I re-did my blood work on the off week of chemo and my Bilirubin went from 3.6 to 1.9 so Xeloda for me, is definitely hard on my liver even though they say it is processed in the kidneys!
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Hi Nicole!
My wife hasn't had a blood test recently, so we don't know anything new. I'm not saying its the COC protocol, but since quitting, my wife feels better. Much less stomach problems and feeling bloated, but it could be entirely unrelated. She will have another blood test in a few weeks. She isn't looking forward to going out, with the covid 19 epidemic, its scary to go outside the house. I do all the shopping now. But we do go for walks outside when its nice out. How are you doing?
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I am good but our son in NY has it and now his fiancee that has been taking care of him got a fever today. My son had fevers from Thursday night high all 102 - 102.5 now today they have been 101. he has a rash now (they believe probably from the high fevers) all over his entire body and its painful and itchy (like sunburn is)...and now today the cough starting to get bad...said it feels like hes been swimming for a long time...they tested him Saturday but are 100% sure it corona because there were a lot of cases of it in the Assisted Living Facility he works in...hes an occupational therapist so he had to go to work because some of his patients can't even get out of bed so if he didn't get them up they could get pheumonia and die....The other morning he was so dizzy he passed out and thought he broke his nose it was bleeding and all black and blue. The hospitals wont let anyone come there for anything unless they cannot breath. We are just so worried now because of his breathing. Other than that...I am ok...I get MRI of the liver April 13th...to finally see if Xeloda is working...
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Oh, I am so sorry to hear that Nicole. I will pray for him and his fiancé. Is there any use being made of chloroquine for treatment in New York? I've heard so much about it in the news, controversy, off label prescriptions and trials. If we could only get a treatment, as a vaccine seems a long way off.
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Dear Nicole, I am sorry for your son, please hang-in there... sending all the warmest wishes and peace of mind, Saulius
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Thank you so much Husband and Saulius.... that means a lot.
Husband No I think they are only using that on the WORST cases...like the ones admitted in hospital...(as far as I know)... There are no treatments for any of it and nothing they are recommending to take except Tylenol.
Today was better he only had a fever once and it was lower at 99.5. We will see how the night goes. She has not had another fever yet today...I am hoping she is not getting it as bad as he had it....but his body is beaten up right now..I mean 7 days of fevers over 102.....is horrible. Now he has to go in hot steamy showers every couple of hours to be able to breathe...they are doing some breathing excersizes that were recommended on line and she pats his back up and down all day and night...
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Hi all...any one read up on Parsley - Apigenin??
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5629766/
Looks to be good but I am seeing some conflicting info about it with 5FU chemos...(not in the article but elsewhere)
Anythoughts...I believe it blocks a few pathways....
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Nicole, I haven't heard of apigenin but it sounds interesting.
Is anyone obtaining mebendazole outside of the COC protocol? If so, have you run into issues lately having your prescription filled? I am trying to find a way to obtain mebendazole outside the COC protocol. The supply from the COC is currently unavailable. Not sure if it is a shortage of mebendazole across the board or a COC-specific issue.
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JFL,
I haven't seen anyone say this on this board, but on the Jane McLelland board on Facebook, several people were talking about this and I think they listed a compounding pharmacy in NJ where they are able to get mebendazole. Not sure how they are handling the prescription, if COC provides it or not. Are you on that board? It's a bit overwhelming, and you have to apply to go on it, but I look at it from time to time. If you're not on Facebook, PM me and I'll copy the info and send it to you.
Just curious -- has COC reduced the cost of their drugs accordingly? On the Facebook page, people were saying that they were paying a decent amount for the mebendazole in addition to their COC charges.
I still haven't started COC but am moving closer every day.
Bev
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Mebendazole is currently available in Canada. Is there any way that with a prescription you could have it shipped to you?
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Ok wow...just saw this... maybe this is why the Xeloda didn't work for me...
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Dear Nicole, I think this is a good example of how careful we have to be with medicines that we take ourselves. Yes, we have to be very careful. Write us how you feel after chemotherapy. You went for Doxil, did you? hugs and best wishes, Saulius
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Nicole,
Really interesting article. I have to keep this in mind when I switch treatments because I take metformin as well. As Saulius says, it is really important that we watch what we are taking.
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I have been doing a lot of research and also talking to a Neurologist at VCU who believes in Janes method...however, he says the problem is the dosing amount of those supplements/off labels that we would need to effectively block pathways would be so high our bodies probably couldn't handle it. This does not include drugs like Metformin. So the a few reasons I have issue with her protocol after MUCH research the past few months:
1. As the Neuroncologist mentioned we do not know how high dosing needs to be to effectively block any pathway.
2. I have yet to meet someone that is Stage 4 with mets in bone and organ or even in more than 1 organ and no bone that has stayed in remission like Jane or even gotten to remission like jane without the addition of Conventional (immunotherapy/chemotherapy)....Why...because think about it... Jane not only had Chemo for her 1st cancer, but she had immunotherapy when she was stage 4 BUT she only had 1 lung met that got cut out!!! She didn't have cancer anywhere else....so my feeling is...IF you can be like Jane 1 lung met and get it cut out or 1 met anywhere that get rid of with either chemo or immunotherapy or surgery and then you take all the off labels to stave off Cancer Stem Cells from re-growing...then and only then do I think it will work. Also with regards to Fenben...again any successful cases I have personally read about all used conventional therapy and to be perfectly honest the ones with most success were all lung cancer...and they had immunotherapy.....
3. I believe this protocol can ONLY work if you get to NED. If you have Stage 4 cancer with more than a few mets...off labels alone are NOT killing your cancer...and probably not even effectively starving it either.
With that said...will I still research and do it if I ever become NED....yes I definitely will but right now I NEED chemo to KILL MY FRIGGING CANCER...and I will no longer risk off labels interfering...and they are interfering... even my Astaxanthin which was suppose to enhance the Xeloda...didnt ....my tumors grew on it....
Off topic I feel pretty fine today..but remember I only had 1/2 the dose...and also they said if you are gonna feel bad its usually days 3 or 4... Thanks for asking.
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Nicole, I did not read Jane's book (I have it, so I have to read it), but from your story seems she was oligometastatic, which is, doctors say, curable in some cases (or at least almost always these days treated with curative intent). If she had that many procedures, it is likely she might have been cured. I also read for ~year now about CSC, also have some field-professionals confirm that they doubt a lot such thing as CSC exist, and although theory is nice, there's no slightest experimental-physical proof that they do exist. So, >20 years of research, and not one CSC found... I do believe Jane's protocol might work, as it is also chemo combination, as any other "chemo" but maybe again, like all treatments that we have for cancer, it does not work for everyone and at every time moment. Science is digging deep to be able to answer when and why certain treatments work in some sub-populations. Maybe one day it will be clear what exactly Jane's protocol does and for whom exactly it works... Best of luck with chemo for you. I believe it is the way to go. If the sucker is aggressive, chemo will kick it in the teeth. Hugs, Saulius
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On the subject of metformin and xeloda, my wife was on metformin when she got good results from xeloda. Of course this is just one person, but for her, metformin didn't cancel out the effect of xeloda. As well, in that study WHCO cell lines are esophageal cancer cell lines, and that might be a distinction. As well, its only an in vitro study of cells, not in vivo.
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Husband yes...it didn't say for breast cancer...but I wont risk it going forward...plus I am worried enough right now that my liver is not going to be able to take chemo at all.... I felt really good today and now my liver is hurting...I know that is the chemo. ....and I do not believe in the theory that you can have pain like this when the cancer is dying...I believe that only happens when numerous mets are all dying and your liver is trying to get rid of the cells...I do not have numberous tumors...not yet anyway....
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Well, I take metformin and also berberine -- metformin at night and berberine in the morning. I do think that's been somewhat helpful for me only because I was determined to be pre diabetic years ago, and my blood glucose readings were putting me on the fringe of diabetes no matter how I ate or exercised. But now, they are normal blood glucose readings, and I feel that that has to have helped not only with my general well being but probably with my cancer as well (although who the heck knows???) But I haven't been on xeloda either, and I also think that everyone reacts differently to drugs as well as to supplements.
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Wow, Nicole. That is scary about metformin and xeloda. We just don't know how these combinations impact us. My COC MO mentioned that he has a BC patient who has been on gemcitabine and COC protocol for over a year. That is a long time for gemcitabine to work. Maybe the COC protocol is helping to make it more effective.
I take the COC protocol but like you, I have some questions about what is causing Jane McClelland's success. In hearing her story from an interview, it is not clear to me that her being "cured" was caused by the protocol she takes. It may help keep things at baby, maybe. But I am not seeing any clear evidence it "cured" her or that she even had anything to cure when she took it. I feel the same way about Joe Tippens. He took an experimental immunotherapy drug and then was "cured". He attributes his success to the off-label drugs and supplements he takes but what about the experimental drug? Is it is coincidence he was "cured" while taking it? Probably not. It may help keep things at bay for him but I am not convinced there was a profound impact in either the case of Jane or Joe from the off-label drugs and supplements ALONE. Preventing recurrence is in a different league than actually ridding oneself of aggressive, late-stage cancer.
In my own case, my expectations of the COC protocol are measured. I hope it will extend the time I last on conventional drugs but am not expecting a miracle. Giving me an extra 3 months here or 6 months there is meaningful to me and if it does that, then I will be satisfied. A cure though? Not expecting that to happen.
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JFL...I 100% agree with everything you posted. I don't want people to come into this thread and thinking I am totally bashing Janes approach. The closet full of off labels and supplements I have says otherwise. However after all these months and hearing hundreds LITERALLY hundreds of stories, everything I stated above is based on that. Let me give you all 2 examples on FB today:
"I have been following this protocol for a year. I was told this week I am NED! I had IDC (breast cancer) with mets to bones and lungs. I've been on Kisqali and Letrazole in addition to this protocol. For those of you who have gotten NED, how long did you continue the onc drugs and this protocol?We have been praying for complete healing and Jesus has answered our prayers!"
Yet in the comments she mentions she had Surgery, Chemo and Radiation....
here is another from today:
"Hello again! I've been blessed to have found Jane almost 3 years ago now when this group was in it's infancy and before Jane published her awesome book! I found a lump and would be diagnosed with a breast cancer recurrence with "innumerable" mets to the liver. I used low dose oral chemo combined with the 4 "COC" meds and a number of other supplements/meds to block most pathways. I achieved a clear PET/CT after 10 months of this but had a very aggressive localized recurrence just 2 months later. I finally started blocking additional pathways I should have blocked from the beginning, switched oncologists and found one who specializes in Low dose, metronomic chemo and have been combining that with IVC directly before chemo, blocking basically every pathway as best I can, and have been blessed with total peace. I am pleased to report that once again, I've achieved a CLEAR PET/CT scan! I am choosing to do one more 12 week round of low dose chemo on a cell cycle we've not addressed and not backing down on starving the cancer just yet, lest it rear it's ugly head again. I know I still have a journey ahead of me but I am so grateful to Jane and the many others who've blazed this trail. According to traditional oncology, I should be dead or actively dying yet here I am, having a great quality of life this whole time. I share this to encourage you all. Be your own advocate. Research. Understand your cancer, address emotional/mental/spiritual wounds too…and LIVE! I've been sharing my journey on my blog and what I learn along the way (like taking etolodac + propranolol and doing HBOT before/after surgery), adding in Black Seed Oil and other things. Feel free to have a look. If you want to know what I did, specifically, it's all in my blog posts.https://cherysesjourney.wordpress.comI had triple positive breast cancer that recurred twice, becoming more ER+ each time and with the second recurrence, had stopped responding to Herceptin."
She had and still is having chemo....and she was responding for quite some time (when she was HER2+ to herceptin)....
Then there are MANY and I mean Many stories especially in the Fenbendazole groups and Joes Group of people that are getting worse on the protocol. Everyones cancer and body is different.
When I am done with chemo if I ever get done or get NED then I will go back to Janes protocol....but I can no longer risk things interfering...Or I will go back once I fail...and am in between.
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Another one is "Chris beats Cancer". He had stage 3 colon cancer, had surgery to remove the tumorous portion, then chose not to do chemo afterwards. As we all know, chemo is prescribed after stage 3 breast cancer as well, because it improves the odds because some people have some metastatic cells outside of the area of surgery. So "Chris beats Cancer" promotes that he beat the cancer through his natural treatments and lifestyle changes. Writes books, sells lectures, charges for phone consultations, etc. But for all we know, the surgery alone could have done it. And then there are the Paul Stamets fans who say Paul's mushroom mixture cured his 85 year old mother of breast cancer. What they don't mention is that she also took Herceptin. I completely understand why people follow these approaches, but one needs to be realistic about what the author's claim to fame is.
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Husband...yes ESPECIALLY when Herceptin is involved...there are women YEARS out on that stuff...
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I really want to believe there are things we can do beyond the standard treatment. And I do believe there are things one can do. I believe that the drugs COC protocol uses are associated with better outcomes in cancer patients, but as Nicole points out, until we have studied the process methodically, its hard to say what subset of cancer patients benefit from these added therapies.
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I tried COC and found it not worth it at all. Did nothing to curb or improve TM’s as I was waiting to be officially DX with Mets. The oncologist appt by skype was a joke. The only positive was I had Acess to there nurse who you could speak with anytime. I found the 4 meds to be easy enough to take but once I start.ed my Treatments I did not want to tax my liver any more than was needed
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Imagine...how long did you do the therapy? Are you stage 4?
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Imagine,
How long did you stay on the COC protocol?
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almost 9 months, yes I was finally DX after finding rising TM's at regular appt with ONC last Feb time frame. I started in March 19 and stoped a couple weeks into 2020. One thing I notice was my metabolic blood work is much better off the COC protacol.
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Imagine...yes this is part of my issue with the Jane protocol...which I mentioned above...the dosing is not high enough to Starve off getting stage 4 or a recurrence..and even if it is...you need your liver to be able to tolerate all these things we are taking....
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Nicole, it is good that you raise the issue of questioning what we read/hear about these protocols. Just because we are open to taking them (and many of us are taking them or have taken them in the past), it doesn't mean we should be following any of these protocols blindly. What we do know is that there is a lot of uncertainty left surrounding these therapies. COC makes it very clear that they only view their protocol to be an add-on to standard therapy, with the idea that it may extend therapy. Many personal stories on various websites do ignore the fact that the patient is on standard therapy. To assume it is doing nothing to contribute to the person's success seems a bit of a stretch.
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Husband, yeah, Chris beat cancer is a joke (a very nice analysis by a super professional David Gorski, you can also find more on Chris on this site: https://sciencebasedmedicine.org/chris-beat-cancer/)... Jane's concepts are much more robust, i.e. another chemotherapy. Saulius
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Nicole, I completely give us predicting whether any chemical will have a positive, negative or neutral effect on cancer in people, there are just too many confounding conditions, and these drugs can have independent effects on the immune system and the cancer cells, etc. I supposed that most of the time they don't make any difference, either way.Except that fenbendazole is clearly helping my dog with her metastatic lung mets, since she isn't on any other drug...
Metformin is often used as part of the protocol for Piqray, where dropping blood sugar is essential, so there the anti-cancer effect of the drug presumably trumps its effect on prolonging the lifespan of dormant cancer cells.
I just read a paper saying aspirin has no effect on MBC survival, either for PI3K mutant or wild-type cancers, and in fact that it shortens the time to metastasis for Pi3K mutant cancers, which is opposite of what everybody expected them to find. The aspirin was given with endocrine therapy, so whether it has any effect on Piqray , or on endocrine therapies that include Ibrance, remains to be seen. But overall, aspirin had no effect either way on survival, and strangely enough they also found that in the absence of aspirin, it took longer for PI3K mutant cancers to form mets, compared to PI3K wild-type cancers. But no difference in overall survival there either. So, like I say, I give up trying to predict what is going on with these drugs in any given condition.
Well, I will continue taking my Celebrex, it might do nothing for the cancer but it definitely helps with my arthritic knees!!
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BSandra, thanks for the link on science based medicine outing Chris beat cancer. I hadn’t read a comprehensive overview of his story, although I knew he was not all he claimed to be.
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I have stopped taking most of the COC protocol and additional supplements Jane recommeded.
I'm on a protocol for Lyme disease and my Lyme NP wanted me to stop the statin. One drug I am taking for lyme is called Disulfiram. I've been doing some research on that drug and it shows to reduce copper in the body and is shown to be anticancer. Has anyone heard of this drug before? Any thoughts?
re Jane's protocol. One thing that bothers me about Jane's protocol is her stressing following a low GI diet. I think diet helps people feel physically better but I doubt eating pizza is going to make a person's cancer spread. I was eating a low fat diet, lifting weights, exercising 5 days a week when I had my first dx. I was probably in the Best shape I have ever been in. So I always question comments about Diet causing cancer.
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What troubles me about Jane's protocol is the vast chasm between its complexity, ie having to research all the unique "pathways" and the lack of scientific evidence backing up the theory that if you block x number of pathways you can stop the cancer growth. It's all so theoretical, yet at the same time demand. I see all these people on the facebook group, frantically trying to add a 15th supplement or off label drug to their daily regimen to halt their cancer growth. It seems overly complex for something that isn't proven. Why would you need so many drugs or supplements to stop cancer cell growth? What proof is there that taking up to 15 drugs that (apparently) add up to a solid brick wall against cancer, doesn't have some catastrophic negative interaction on some other part of a person's metabolism. Who could possibly predict the interaction of so many drugs and supplements to both know this unique combination is effective and safe?
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Husband, right on point! No one could ever even make a clinical trial with that amount of drugs to prove anything. Well, there's phase III clinical trial on COC 4 med protocol, it is already quite a time there, and there should be some interim results? Saulius
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Salius - Your statement "Who could possibly predict the interaction of so many drugs and supplements to both know this unique combination is effective and safe?" really hit the nail on the head. I had to laugh when I read it. Not that I think it is funny but it is somewhat of "The Emperor's New Clothes" scenario. Not sure if that book is popular where you live but it was a story we learned as children in the US.
I have been on Gemzar and the COC protocol for over 5 months now. Still no scan. COVID kind of interfered with any plans to get a scan. The last time I went this long without a scan was when I was on Ibrance years ago and NEAD. The COC MO had me increase my metformin to 3 x per day now. He also prescribed that I take all 4 drugs continuously rather than alternating. The only issue with that is that mebendazole is not available so for now I am only taking the 3 others. Still on a half dose of the statin. I was surprised the COC MO told me that he has another BC patient who has been on COC protocol and Gemzar for over a year now and that it seemed too long to be on chemo, as if a year on any chemo is unsustainable from a side effects perspective. On our last call, he mentioned that I had been on it a good length of time and asked when I would be stopping it. I told him I would stop it when it stops working or when I can no longer tolerate it. I was surprised that he doesn't see patients being on chemo for long stretches of time. For many of us, there is no other option after a certain point.
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JFL... I didn't know people could stay on chemo indefinitely either until my MO told me that. When she originally talked to me about Abraxane...I was like...well how long will I be on that? Will I go off if we get NED? She was like.. "No.....you will be on it until it stops working or until your body doesn't tolerate it".....(paraphrasing).... but I was like huh??? Now I know better of course. I did actually talk to someone on FB that has been on Taxol (I believe) for over a year or more and she said she is doing just fine....so go figure....
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Dear Nicole, that is what we also got to hear from our MO when Sandra got diagnosed: "we'll continue with chemo until we can". So we did it for 12 cycles, and then were left on HP, and when local progression in breast happened, they reinstated chemo for another 6 cycles which was again working. Saulius
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Is anyone taking Aspirin that has the PIK3CA mutation??? If so you might want to stop.... I will cross post in Liver Mets Thread...
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Thank you for the information Nicole. I’ve been taking supplements after reading James book for a month or so now. I’m still learning for sure. I am taking an aspirin a day with the PIK3CA. I think that is the biggest challenge with the book is Sometimes we find conflicting information and not sure what to take. It’s probably best to have a naturopathic doctor to help guide and sort through the information. It’s overwhelming. I will say that my alkaline phosphatase dropped from 166 to 113 in 3 weeks with supplements while on gems carb combo
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Hi,
I have just been diagnosed with grade 2 ER+PR breast cancer. I've got Jane's book but feel a bit overwhelmed.
Without sounding rude, What bit do I read to get to the answers? (I know I sound rude but I feel desperate to start the actual treatment asap and then read her story after
)
She said find out what my cancer expresses? like hedgehog signalling? Wnt/beta-catenin? Notch? TLR-4? TLR-9.... etc..? How do I get that info? I've had a biopsy, but have other tests soon...
and how to find out if my cancer is glutamine driven?
I totally don't understand the Metro map!
I must admit, I scanned some of the book, and read some bits, but in the summary it says; discover the individual metabolic drivers of your cancer by researching pubmed, type in metobolic phenotype then my cancer... so breast cancer, look for words from the Metro map, to work out whats driving it... but I looked on their and its like the alphabet threw up, it's just so overwhelming! am i doing it wrong?
How do i find out the genetic changes in my tumour?I took my glucose reading, and it's 6.3, is that ok? are you supposed to take it at certain times of the day?
Sorry for all the questions!!!
Jen
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Jen sorry for your diagnosis. Are you stage 4??? If not...this thread is specially for Stage 4 BC only.... If you are not I suggest you join Jane McLelland page on Facebook there is a lot of information there. To make your metro map I also suggest you read the book fully and then make google your best friend
.. You have to google your specific cancers cell lines. Also if you are not Stage 4... Start a thread about this topic in the Stage that your cancer is...because keep in mind Stage 4 people are blocking much more pathways than you may need to....and wont need things you may need and vice versa.
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Oh, sorry, I didn't realise
I'm not sure what stage I am yet, I'm waiting for more info from the oncologist. Thank you for the advice 
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I've delayed the COC protocol for now until I'm done with my Lyme disease meds. The SE s from the Lyme meds are kicking my butt. I went to get a NAD iv today, 6 hour drip, at the NP office to help with the hertz reaction. So about half way through they tell me uh btw did you know this was a covid 19 testing site? I'm like ah no. You think they would have told me when I scheduled that iv. No one came in for a test but jeeze. Just be careful everyone. I think about everyone often and I hope you're doing okay.
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Simone, that is concerning about the place where you were receiving the IV is also a COVID testing site. One would hope that would be advertised on a prominent warning so that patients could make decisions about whether to go there accordingly. I hope all goes on track with your Lyme disease treatment. Sorry to hear you have to deal with that on top of everything else.
Have those of you on the COC Protocol who didn't have a recent supply of mebendazole received any yet? I received a call a week or so ago from another compounding pharmacy coordinated by the COC and they sent me a 30-day supply of mebendazole, except at a much higher price. It is a pharmacy in Altanta that is helping out temporarily while the primary pharmacy sources its mebendazole supply. I called back the pharmacy and asked for the remainder of my 90-day supply now. I don't want to end up in the same position in 30 days. Also, they charged $14 for shipping. $14 x 3 separate deliveries is $42 for shipping alone. After I mentioned the shipping charges for separate deliveries, the pharmacy shipped out the additional supply at no charge.
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A new study from Walter Longo at usc showing aggressive cancers with KRAS mutations are very senstive to the combination of fasting (or fast-mimicking diet) plus high amounts of vitamin C. This work starting to get very specific in mechanistic detail, which is wonderful. Study is on colorectal cancer, however note that far fewer primary breast cancers have KRAS mutations, although these can appear with activated MAPK for endocrine-resistant cancers and late-stage cancers, are somewhat more prevalent in her2-positive cancers Tests are combining this with chemo, but their long-term goal is to find an all-natural treatment for aggressive cancers of this specific type, and this is another step towards that
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Cure-ious,
This is quite interesting. I just read the article that you linked. My question is this, though: this doesn't look like a money maker for anyone, so how/why would clinical trials proceed? I mean, for us, it would be terrific. But I would assume that Big Pharma could care less.
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True tho I suppose some in-house trials can happen at relatively well-funded cancer sites. I'm just glad they are able to tell us why and what types of cells these treatments work on. Z had very good response to chemo and she did fasting. However it obviously didn't save her, was it worth it? If they can find a very robust protocol that lets us hang out before going down the chemo road, or survive for a long time off of all treatments, it would be a terrific advance. We also know that low-carb is very helpful for PI3K drugs. I think earlier-stage cancers care a lot more about estrogen availability than sugar, but then it switches. Other cancers with KRAS mutations are aggressive, like lung and pancreatic. Our cancers start out estrogen-dependent then mutate to sometimes look more like these harder-to-treat cancers. But remember HER2-positive used to be the scariest type of MBC to get, and now they think it will be the first one with a cure. Our other subtypes just need an immunotherapy combination that works.
A new paper out in Nature shows that pancreatic cancers degrade surface MHC-1 molecules to hide from immune system, and they report that using an autophagy inhibitor to prevent the destruction of MHC-1,is successful in combination with immunotherapy, and seems to make it work for that very "cold" cancer type. HER-2 MBC cancers also have low MHC-1, not sure if they destroy it by autophagy, but if they do, a similar combination might work for them. We need the parallel insight into most luminal MBC to make the comparable breakthrough, however most ER-positive cancers have high MHC-1 so it is going to be a different trick that exposes our cancer to killing from immune system
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Cure-....that all sounds great...I have been saying for months now that HER2+ is (to me) the better one to have...not that any are good obviously but they just also came out with ANOTHER new drug said to be really good (saw it on FB name escapes me now)... anyway... The question is do we want to inhibit (stop) autophagy...if we are HER2- is that what you are suggesting? I do know that Claritan and ...I "think" DPM... anyway there is still a BIG debate on if Autophagy is GOOD or BAD and it is different if you have ACTIVE cancer.... In other words...you might want to inhibit Autophagy if you do not have ACTIVE cancer but you want Autophagy if you have active cancer....
Thoughts?
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Hi all. I had a PET-CT on Saturday after 6 months on Gemzar + COC Protocol. My first scan on Gemzar. I was worried I was progressing. I was shocked the scan was REALLY good (for me, at least; it is all relative). I haven't received the official results but my DH can view the scans in the hospital system and compare them to my previous scans. I reviewed them with him. There was one small area in my liver that lit up a bit but the rest of the liver appeared metabolically inactive. On my last scan before starting Gemzar, a majority of my liver lit up like a fire ball, highly active and metabolic. There also appears to be some shrinkage of the tumors.
I am really on cloud 9 as I have only responded this well or better to my first two lines of therapy ((1) Ibrance/Aromasin/Faslodex and (2) Xeloda) and am now on line 8ish (I have taken a few more meds on an interim basis while waiting to take another med that I wouldn't consider "lines of therapy" and have done Y90 which isn't included in that 8 number). On my first two lines, my tumors were metabolically inactive for a over a year each. Since then, most of my other therapies have improved my mets or kept them stable for a period of time or I had mixed results with some improvement and some progression. Never have those subsequent lines of therapy resulted in only having one small area that is slightly metabolic. None of my IV chemos have responded like this and I am 5.5 years into liver mets treatments.
There is no way to know for sure but I suspect that the COC Protocol is boosting the Gemzar effects. My new COC MO threw the kitchen sink at me at my last appointment and I am now ramped up to taking all four drugs at once and other than a half dose of the statin, have worked my way up to full doses of the other meds over a period of 6+ months. I started the COC Protocol when I was on Navelbine and Tamoxifen but progressed shortly after starting the COC Protocol. I suspected I was progressing before I started COC. Thus, I stayed the course to give it a chance to work. I have heard COC takes some time, like 5-6 months. It may be a coincidence, but my COC MO mentioned that he has another BC patient who has been on Gemzar + COC Protocol for over a year which is a long time for any IV chemo. Someone posted here about the COC Protocol making the cancer more sensitive to Gemzar specifically. Maybe that is in fact what is happening. Praying this will last a bit longer! Given I am so heavily pretreated, my expectations for treatments are very tempered at this point and this definitely exceeded expectations. My regular MO has kind of blown off the whole COC thing and hasn't really directly addressed it either in support or objection to it, which is fine with me. Maybe he will give it a second thought now.
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Wow JFL that is awesome news, especially in the light that this is your 8ish line of treatment...I am so happy for you!
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Nicole , in my view this part has little relevance to most MBC, because we lack KRAS mutations. It is saying if the cancer has KRAS mutation, and is being treated with immunotherapy, then an autophagy inhibitor would help boost MHC-1 levels and increase cancer cell killing.
Most ER-positive MBC do express MHC-1 on the cell surface, so autophagy inhibitors should not really be helpful. The bigger question is why ER-positive MBC cancers are not killed by the immune system? They need to define that and get a drug that fixes it so we can all get immunotherapy.
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JFL,
That's great news! I'm praying too that it lasts longer for you. It's so nice to hear positive news.
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Cure- Thanks for your insight... I agree 100%
JFL WHOOOOOO HOOOOOOOO !!!! Now ...YOU are what I would consider inspiration especially to me and my type of BC!!!!!!! So BEYOND happy for you!!!!
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JFL>...are you still having a hard time getting Mebedazole??? I just saw a COC advertisement on FB saying its now available.....
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is anyone else still on the COC protocol?
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Simone,
JFL posted something in the last day or so -- she is still on it and doing well. See above.
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Wow, JFL, "I suspect that the COC Protocol is boosting the Gemzar effects", also another patient mentioned by your MO - we have to take notes! Saulius
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Simone, I am on it. Have not managed to increase my doses - gets to onerous to take tablets from it more than once a day 😏
I know , lazy.
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How are you doing on COC? Any success? I might go back on the protocol after I'm done with Lyme disease meds. Not sure.
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btw I still have some mexbenzole pills if anyone needs them
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Simone, I am on it and think it is helping. Gemzar + COC Protocol currently going well after 6 months. Just had a really good scan a few days ago. Surprisingly good. I started COC Protocol last summer and more recently boosted up the Protocol doses per COC MO's instructions. I am now on all 4 meds simultaneously and am up to 3 metformin a day. The only dosage the MO is holding back on is the statin. I am currently at half dose. Perhaps he will boost that at my next appointment though.
Nicole, I was able to locate mebendazole from a stand in pharmacy the COC is using in Atlanta. Thanks for asking. I had to pay more but at least I have it.
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Hi JFL, if you don't mind my asking what dosages do they have you on now?
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Hi GreekNinja, copied below is the most recent 90-day prescription summary the COC sent to me. My atorvastatin dose is a half dose. Most people take 80mg/day, I believe.
1. Metformin Extended Release 500mg three times daily with meals for 90 days
2. Atorvastatin 40mg one tablet every bedtime for 90 days
3. Mebendazole 100mg daily with breakfast or lunch for 90 days - currently out of stock; our nurse team will be reaching out to you with potential options
4. Doxycycline 100mg daily with breakfast or lunch for 90 days.
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I got an email today from COC that they got approved to add a new drug but didn't say what it was....anyone know?
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Nicole I haven't heard about any new drugs. I did receive an email that they are now using a special type of mebendazole called mebendazole polymorph-c, which is believed to be more effective. They are also offering a few of the drugs via a transdermal patch rather than a pill for persons who have difficulty digesting the pills. If you hear more about a new drug, let us know.
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Will do JFL.... here is what the email said:
New COC Medication - Available through Care Oncology for our US Patients
It has taken nearly 2 years but we are pleased to announce a new medication Care Oncology (US) has sourced that may be useful for some of our patients.
If you are interested in learning more about the potential benefits of this medication to your COC protocol, your Care Oncology Oncologist can assess your eligibility at your next follow-up appointment. If you are not currently a Care Oncology patient, schedule an appointment with a case manager for more information on eligibility for the COC Protocol and this new medication.0 -
Very interesting. I did not receive that email. Strange they didn't just come out with it and state which medication it is!
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Right? and strange that I got it since I am not currently a patient with them...I also saw someone else posted that they got this email as well on FB....
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I got the same email as Nicole and I'm also not a patient. I was hoping that someone who is would know about what drug they are talking about -- but I've got no clue.
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I had my COC MO appointment around 2 weeks ago and nothing was mentioned about a new drug. I would like to get on it if there is a new drug.
My alkaline phosphatase shot up last week to an all-time high and my liver enzymes and tumor marker went up too. I decided to stop the statin and the mebendazole until my next labs to see if they go down. I am a bit freaked out about the alkaline phosphatase and am suddenly really tired. I am on Gemzar, which increases alkaline phosphatase and liver enzymes, plus the COC can increase them as well. However, I am probably progressing on my current therapy. I will now have a PET scan this weekend and will likely be switching to Piqray at my next MO appointment. I do think that the COC protocol has helped me to remain on Gemzar longer than I would have without taking it. It has been working for 9 months, which ties for the longest an IV chemo has worked for me, 5.5 years into treatment. Doxil plus Y90 also worked for 9 months a few years back but that was likely mostly due to the Y90 and not the Doxil so not even sure Doxil really counts.
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JFL...my liver numbers were the highest ever when I took mebedazole....
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Someone on facebook, and of course we can't take this as gospel, said it was a form of ibuprofen. Sorry, but I forgot the name. It's some formulation of ibuprofen. Can't say whether that's a fact or not.
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might it have been Flarin? That's a newish formulation of ibuprofen in a lipid base.
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Yes, thanks for jogging my memory, Flarin was what someone posted. Once again, not saying its a fact, just that they posted it.
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yes I had it prescribed to me back in spring in addition to the usual ones.
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Thanks for the info. I am going to email the COC about it. Not sure why my COC MO didn't even mention it.
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JFL.... ok so they were saying on the FENBEN FB group that it has been researched that Fenben does not elevate liver enzymes the way mebedazole does. One person even cited her doctor researched it as well ..... she does have good liver enzymes though but she also used Apricot Kernels to rid herself of 1 liver tumor (don't believe it was breast cancer) ...she did say the apricot kernels did make her liver enzymes off the chart...but yea.
I am thinking about possibly adding in the fenben..but I NEED to tell my MO and she is NOT gonna be happy not after the mebedazole... I may do it next month after I scan and not tell her then if they are elevated I will tell her why. Not sure.
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Nicole, interesting information. Where will you obtain fenben? I worry because it is not standardized for humans like mebendazole. Everyone is doing their best to guess the proper dose. I doubt drugs for dogs and horses go through anywhere near the same quality standards as drugs for humans. However, many have taken it here with no issues. I am hoping my liver enzymes go back down on Piqray. I started it today. The liver enzymes have been elevated since I started COC Protocol a year ago but recently they jumped higher and my alkaline phosphatase jumped to an all time high. Part of that was from Gemzar, part likely from progression, on top of the mebendazole and statin. Due to liver enzymes, I didn’t start the stain until 3 months into my treatment and never made it past one half a dose. However, I do take all 4 of the primary COC drugs at the same time. No alternating between doxy and mebendazole. If I cannot resume mebendazole and the statin, I may push to start taking the new COC medicine which is an NSAID
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Yea..for those of us with elevated liver enzymes its hard to stay on "extra" stuff besides our conventional treatments from our MO's. I have (bought a long time ago) the fenben that Joe Tiippens took the pack for dogs and there is tons more on amazon. believe it or not I heard that causes the LEAST problems with liver enzyme elevation...yea I know its for a dog..but like you said...there are A TON of people on it and doing fine. Frisky also took it here for a while she was fine too.
My friend Lauren that I met through the Metro Map thing on FB and we met personally here where I live too (she died May BC Extensive Bone Mets she was only 1 year out well almost 2 from Stage 4 Diagnosis) she said something that made a lot of sense and she was really smart she basically designed the map that this one whole group now uses...anyway she said that not to stress if we cannot take the drugs to block the pathways now...but that if we can get NED...then it is very important to be blocking the pathways..because right now we are in a kill phase... I am with chemo...so if I can kill everything then block that would be great. So I am not stresses too much that I am not taking everything on my map.
Are you taking berberine and Metformin or just one? If just Metformin how much do you take? I take 500 mg 1 x a day....I don't know that , that is enough...
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I take metformin 500mg 3 times per day. I phased up from 1 time per day to 3 over 6 months or so. I do not take berberine
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Thanks JFL
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Hello All.. Im Amy and new here.. I have been Dx with Bone mets just recent 10/12 I havent done any treatment yet as I am waiting on pathology still.. The wait is ridiculous! Ive had one zometa infusion. In 2012 I was dx with stage 3 BC beat that with chemo and rads plus a healthy diet and some supplements. 8 years later here I am mets to my spine, ribs, chest plate and pelvic bone. I have already started on a high alkaline diet and started on many supplements to support my immune system and bones. On top of this I ran across Janes book and LOVE IT! Which lead me to calling the COC I am suppose to have my first call with their oncologist on the 18th. Im hopping this thread leads me to good info and experience with this protocol.. I just dont trust chemo and rads alone this time around.
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ABC what kind of BC did you have when you were stage 3?
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ductal 3 times positive Stage 3 right side lymph node involvement
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stage 3 ductal 3 times positive with lymph node involvement. Cancer was on my right side.
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So you are triple positive?? Are you on Herceptin?
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are you suggesting the few week inbetween chemo treatments? Or the time after a full cycle?
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nicholerod yes my original cancer is 2012 was triple positive! However my biopsy done 10/26/2020 to my pubic ramis is not back yet so I am unsure of what is going to happen as far as a treatment plan. Back in 2012 I did do a years worth of herceptin. I also took 7 months worth of tamoxifen but my body would not tolerate that so My doc took me off it and at this point I was considered NED. Now here I am 8 years later and told I have multiple osseous lytic lesions. Petscan 10/19/2020 showed many!! Biggest is my T3 spine which is basically destroyed due to cancer. I am beyond frustrated at the time it is taking for pathology results. In my opinion it's the reason most are addicted to xannax and percocet. Since I left the office from my biopsy I have not had once call or any offers for additional health concerning behavioral. It was more like.. here is a jar of xannax and percocet we will see you November 16!!!!!😮😮😮 I immediately changed my diet, started Jane's book, called the coc, and am trying to get approval on my insurance to get into Moffitt Cancer Center in Tampa Florida.. also takins suppliments to help my immune system and bones!
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ABC, another good book to read is the Metabolic Approach to Cancer by Dr. Nasha Winters. She has been living with stage 4 Ovarian cancer for 29 years.
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Simone thoughts on Berberine with Metformin....not at same time of day...but about taking both...
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Hi Nicole. I don't take either one anymore. I had stopped most of my supplements when I was being treated for Lyme disease. Now that is better I was thinking of starting the coc protocol again. I have enjoyed not taking so many pills. I never took both metformin and berberine at the same time. Berberin upset my stomach but I do miss the metformin. I've read others have taken them both. I think that would be hard on your liver.
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hi Simone - did not realise you had Lyme disease and were treated for it. When were you diagnosed and what made you ask for tests and when were you treated ?
I am taking my COC medication on and off - never managed to get in with metformin 3 times/day so sticking to 2. Went off all supplements back in March when started to get strange breathlessness and other weird symptoms then introduced them one by one back. Was too busy/lazy/unwilling to pay to organise a review appointment with a new prescription and then to order it . I guess as my scans show continuous resolution I did not bother that much ..
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I needed help with this...but...so a friend explained it like this:
Metfromin and other AMPK signalling activation strategies are doing more than one thing- all busy contributing to your healing on many fronts AND because of the cleverness of cancer and the it's constant need for energy it will look for fuel when it needs it...even if to just remain dormant rather than die. In our case cholesterol is this alternative fuel source that our cancer will go for. So what the research has unpacked is that Metformin will UP-regulate the metabolism of fatty acids and this up-regulation can help the cancer cells that might otherwise be snuffed out from estrogen deprivation, to survive. So the key is to look at your Fatty acid pathways on your worksheet/metro map and make sure you have ample coverage of FAO, Mevalonate FAS, SREBp's 1 and 2 ..make sure you steer completely clear of the bad oils, the fried foods etc..
Ok so on my map ...the things that cover the Mevalonate, FAS SREB 1 & 2 are :
Fatty Acids
Acetate
ACLY
F.A.S. (activates HER1/2)
F.A.O.
SREBP-1
Mevolonate
SREBP-2
Berberine
Berberine
Hydroxycitrate
Metformin
Doxycycline
Berberine
Statin
Dipyridamole
Garcinia Cambogia
Low Dose Aspirin
Mildronate
Reishi Mushrooms
CholestPure 2
Luteolin (Celery Juice)
+ R-Lipoic acid
Berberine
Citrus Bergamot
Citrus Bergamot
Statin
Omega 3 DHA
Omega 3 DHA
Tocotrienols
Berberine
Omega 3 DHA
I don't want to take Berberine though.... so this really sucks because now I have to worry if I take just the metformin I am exposing the fatty acid pathway
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Hi Anotherone. Glad to hear you are doing well. I was having neurological issues (numbness in the arm, vertigo, bells palsey) and inflammation. I researched Dr Google and found chronic Lyme disease can cause those symptoms. We use to live near woods and deer would visit our backyard all the time so Lyme disease made sense to me. I found a Naturopathic doctor who specializes in treating Lyme disease. He ordered several tests and they came back positive. I took about 20 pills a day for 7 months. I'm so glad I found him, I feel so much better.
Nicole,
Interesting article, thanks for posting it. I've been following a clean keto diet to try to keep my glucose levels down without meds. I wonder if that is doing more harm than good.
Does taking berberin bother you? Can you pulse it and pulse metformin and still get the same benefit?
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glad you feeling better now !
20 pills/day for 7 months!
😕
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Nicole, I am not sure if different types of breast cancer respond differently to metformin alone, but my wife has been on metformin for the whole 4 years she has been metastatic stage IV. I find Jane McLelland's suggestions to be exceedingly theoretical. COC protocol always prescribes metformin for breast cancer patients, along with the statin, antibiotic and mebendazole. Observational studies have linked use of metformin alone with increased survival in breast cancer patients. Perhaps another ingredient can improve on that, but that is speculative. I wouldn't readily accept the concept that metformin alone causes any harm.
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Husband I agree with you but you do realize that paper I posted had nothing to do with Jane right?
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Nicole,
I thought that paper was interesting. However, I am curious why you do not want to take berberine? Is it bc of the constipation side effects?
I was taking berberine in the morning and metformin in the evening. I've stopped with the berberine (at least for now) because I'm sick of taking pills, but still taking the metformin. My internist put me on that sort of prophylactically because we discussed some reports that were out at that time, echoing what Husband is saying. But that article does raise a few concerns. For me, though, I am pre-diabetic and so the metformin serves several purposes. But food for thought.
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Nicole, I've forgotten, but did you decide against using a man made statin?
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Here is a link to a follow up article regarding metformin in estrogen positive BC -- note that the jury is still out on this.
https://journals.lww.com/oncology-times/fulltext/2...
Interesting that one of the researchers said this:
"What this means is that metformin, based on our preclinical investigation, can have pro-cancer or anti-cancer effects depending on context. If a tumor is in a growth state, such as in metastasis, it may have anti-cancer effects. But if a tumor is in a stressed state, such as during anti-estrogen therapy, metformin may have antagonizing effects."
So I guess that begs the question for those of us who are metastatic, but who are still taking anti-estrogen therapy....
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Interesting article BevJen. So sounds like if your NED or Nead and on a anti-estrogen you shouldn't take metformin. Did I understand that correctly?
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Simone,
I'm not exactly sure. The reason I say this is because, for example, I am metastatic (which means metformin should be okay for me) but I'm also on faslodex, which exerts anti-estrogen activity (which would seem to indicate no metformin.) I wish I knew the answer!
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Bev thanks for that...I would say you are on anti hormonals..thats what Ibrance is right? But then again you are post menupausal??? Hrmmmm
Husband... I stopped the statin a long time ago when my bilirubin was out of control...
Bev...did you ask me about berberine- why I stopped taking it? If it was you, I stopped bc of my bilirubin.... and of course Consitpation ughhhhh!!! STORY OF MY LIFE ...
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Nicole,
Yes, it was me about the berberine -- I had forgotten that you thought it was affecting your bilirubin.
Faslodex/fulvestrant is anti-estrogen (just like the AIs or tamoxifen) -- I don't think it matters if I'm post menopausal from what the two articles say.
This is why I totally gave up on the Jane stuff -- I just feel that there are a lot of subtleties there that I don't understand, no matter how much reading I could do.
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Bev...I hear ya about the giving up on her protocol.... My friend Lauren (that passed in May) she was the one that helped me a lot with the Map...she had said to me...if your body is not over burdened right now with disease don't stress too much about being able to do the protocol...try to let your conventional treatment (chemo) get you to NEAD...once it does then use the protocol...because the purpose of it is to stop CSC ....Chemo kills cancer..what is doesn't do is kill CSC's thats where Janes protocol comes in..but it's a lot of meds to take..and in turn a lot of pressure on liver...
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I gave up on her protocol too. Way too many pills and people were guessing the doses needed. It was frustrating for sure.
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Ok...ladies....thought this might be of interest...its about Xeloda or 5FU chemos and Metformin ....*sigh*....not sure how much weight I give it...but...let me know what you all think....
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It's Flurian. It comes from England. It's just a liquid gel form of Advil. I'm trying to get an answer from them if it's any better or worse than Celexocib. I've already purchased it -Doh!. It's 3 pills a day, which is annoying...
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I know this thread hasn't been active in a while, but I'm considering trying this. Has anyone out there had experience with the COC protocol? Positive or negative?
All my treatment has been standard of care, mainstream modern medicine, and I've done everything my doctors have said to do. But it's not working. I'm back on chemo, which has taken a toll on my quality of life, and the cancer is still progressing. I'm having increasing pain and disability. I'm afraid at this rate I don't have much time left.
I've been looking for clinical trials to join, but it is surprisingly hard for everything to align for that, actually. Between timing, distance, and all the exclusion criteria, I find myself shut out of many trials I'd like to be in.
My thinking is that I'd stay on my present chemo regimen, while doing the COC protocol. My main concern is that adding the COC protocol would be a lot of extra drugs to take. Also, I worry that my MO will not be very open to the idea. Anyway, I'd appreciate others thoughts and insights.
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My wife did COC. She was very happy with the attention she was given, they reviewed her bloodwork and scans and provided any advice she wanted. She did however suffer an internal bleed and got sick of taking all the medicines, and quit everything except the metformin that she had already been taking for years. Can't say whether COC protocol had any positive impact or not. She just got sick of all the pills and wasn't sure what to blame for her feeling crappy. The bleed turned out to be a stomach ulcer. Completely unrelated to cancer or COC.
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Buttons - I think it's worth a try. There are many small studies supporting the use of all the drugs in the COC protocol. PubMed search the different drugs to see some of the studies if you are interested. I do take the meds for COC and other supplements that Jane and other integrative specialists suggest. I have no way of knowing if it helps at all. It is not curing me. There is a possibility that it has kept my very aggressive, fast growing cancer relatively stable over the years. The reason I think it's worth considering is because the statistics for us stage 4 thrivers is dismal with conventional treatment. So, I will try anything that may help extend my life. As husband mentioned, there are many pills to take. However, I don't mind taking the pills. I have a system down and it works for me. I have never had any adverse side effects from taking the COC protocol or some of the other supplements in Jane's protocol. Your main onc will not think it's a good idea. My main onc does not know that I am on the COC protocol. The COC onc knows what conventional meds and additonal supplements I take. She checks to make sure there are not any negative interactions. ~Kar
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Thank you Husband and KarPC for your feedback. Overall it seems to be worth a try. It probably won't hurt anything, and it might help. If I have trouble with it I can always stop.
My cancer is also extremely fast growing. When I do chemo, the visible tumors under my skin shrink down just a bit, but by the time of my next cycle, they have managed to grow back, and then get even bigger during my off week, amounting to an overall pattern of progression. Grr! It's so frustrating. I'm hoping the COC protocol (or something like it) would help slow things down a bit. If it caused regression, even better.
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buttons, I have many of the same questions plus some more so I’ll keep an eye on this thread for any more information. I would say go for it because what have you got to lose? Conventional is not healing you anymore but that doesn’t mean you should give up.
I’m wanting to get back on Jane’s protocol but I fear I’ve messed it up. I know that letrozole has stopped working due to the cancer finding other pathways. I was on metformin but no other drugs that she advised. I’m not diabetic btw. I had also started eating sugar again and realized that I have a binge eating disorder so sometimes it was a lot.
So now, tried Ibrance but it made me much worse and the pain was bad. Went off of that. Went off the sugar in May. Take letrozole and metformin and several supplements like curcurmin and Quercetin. Started the keto diet again and this time being very strict...I feel safe doing this because I’m twenty lbs overweight and haven’t begun the cachexia phase. I do feel a little better but I’m still going down pretty quick. Now I’m wondering if starting the protocol again would even help? Like are metformin and letrozole even still effective or is that opportunity now gone? Well I guess I answered my own question above to buttons so I will take my own advice, but I’d welcome discussion on this
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buttonsmachine,
I was taking the COC meds. I've been NED for over two years so I quit taking so many pills. I only take a statin along with a few other supplements now. I'm not sure if that helped or not but I don't think it will hurt.
I also take mistletoe injections and ldn. Both have definitely helped my immune system.
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figures....
and another one bites the dust...
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That is disappointing. About the only hope then is that combined with other components of the COC protocol, it has benefit.
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Dear Nicole, Husband, unfortunately results were expected...
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Hello all,
My first appt with COC doctor is this Friday. I'm lobular, stage 4, triple neg, with two prior bone mets and a recent brain met in cerebellum. All three have been radiated.
My question: I had to stop Piqray after 7 months due to Extreme diarrhea, night and day, with 30 pound weight loss. It looks like the side effects of several of the drugs on the COC protocol can also be severe diarrhea. To those of you on the protocol using the four drugs, is that something any of you have experienced? Thanks a lot.
Kitkit
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Hi kitkit, I am no longer on the COC protocol but I never had a problem with diarrhea while on it. I am on ibrance though which sometimes causes constipation. So maybe that is why. The only problem I had was nausea with metformin. It may also causes weight loss.
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Kit ...are you eating RICE like EVERY SINGLE DAY??? lol if not try it ...you are bound to stop having diahrreah also get a GOOD probiotic....a refrigerated one high quality
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I am new to this breastcancer community and I have stage IV metastic breastcancer that spread to my bones. I would like to find out what off label drugs and supplements to starve the cancer cells
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laling, sorry you find yourself here. I would start by reading Jane's book. It's hard to follow in some sections. It took me several times reading it. I recommend you find yourself a good Naturopathic oncologist who will prescribe the off label meds and also check to make sure they don't interfere with you SOC. You can also get some of the meds through COC. There are a couple of Facebook groups that have quite a bit of info. Just search for off label drugs for cancer in groups and a few will come up.
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I am going to cross post this in TNBC thread and the Jane thread (I think we have one or it might be the Fenben thread) anyway is anyone doing the Keto diet and seeing any positive results (cancer wise) not with regards to weight? I ask bc I have been looking into that and the Carnivore diet...my concern is the blocking the Fatty Acid pathway...This Dr. in the video explains the metobolic side of cancer and its very very good. https://www.youtube.com/watch?v=06e-PwhmSq8&t=2336s
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Is anyone currently doing this protocol? I was very interested in it when I first read about it. Today I got some info about a supplements plan, which seems to be new, and was wondering if anyone is doing that. Also, in that info it listed a Richmond, VA address. I'm wondering if that is now affecting payment through American insurance plans.
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Hi Bev..I am in a lot of FB groups of people doing the COC I have never heard that it is in USA or through insurance but if it is. that would be great to know...I can tell you that I have read MANY women with hormone positive breast cancer progressing on Fenben... not so much other cancers or TNBC but hormone positive specifically....and while I realize the COC prescribes Menben...not Fenben its really the same mechanism from what I understand...and NOTE: very hard on liver numbers..so must take Tudca or Milk Thistle...
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hi from New Zealand
I am about to start the COC protocol - my GP prescribing what she can, buying herbs etc myself. Talked to my onco today who is great. He is arranging me to meet his oncologist colleague who runs this protocol
Once I crack into it I will let you know how it is going. Whilst there are no clinical studies there are loads of stage 4 people who’ve survived doing the protocol alongside the conventional medicine.
I’m just researching how to bring my white blood cell count up - it’s .8 so any suggestions most welcome.
Thank you. Cxo
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Take Reishi and turkey tail mushroom
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Попробуйте сок из бузины,он поднимает лейкоциты.и сырой яичный желток.
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Anyone on this thread still doing Jane's protocol or the COC protocol?
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I have not been involved in this but do follow many threads. Sadly, nicolerod passed away. You could pm some of the others to see if they still follow this protocol. Take care
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Thanks @exbrnxgrl - Unfortunately I saw there were a few on this thread that have passed :( I am still new to all thats out there and stumbled across Janes book and then I saw a thread here about it. Thanks so much for getting back to me.
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