Jane McLelland protocol / COC protocol for STAGE IV members ONLY
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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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