Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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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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