Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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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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