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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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Comments

  • husband11
    husband11 Member Posts: 1,287
    edited November 2020

    Nicole, I've forgotten, but did you decide against using a man made statin?

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2020

    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....

  • simone60
    simone60 Member Posts: 952
    edited November 2020

    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?

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2020

    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!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020

    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 ...

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2020

    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.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2020

    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... :(


  • simone60
    simone60 Member Posts: 952
    edited November 2020

    I gave up on her protocol too. Way too many pills and people were guessing the doses needed. It was frustrating for sure.


  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2020

    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....

    https://onlinelibrary.wiley.com/doi/abs/10.1002/jcb.26291

  • ballyhoo
    ballyhoo Member Posts: 4
    edited December 2020

    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...

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2021

    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.

  • husband11
    husband11 Member Posts: 1,287
    edited July 2021

    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.

  • karpc
    karpc Member Posts: 192
    edited July 2021

    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

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited July 2021

    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.

  • pipers_dream
    pipers_dream Member Posts: 187
    edited September 2021

    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

  • simone60
    simone60 Member Posts: 952
    edited September 2021

    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.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited December 2021

    figures....


    https://www.utoronto.ca/news/common-diabetes-drug-not-effective-against-early-stage-breast-cancer-researchers-say

    and another one bites the dust...

  • husband11
    husband11 Member Posts: 1,287
    edited December 2021

    That is disappointing. About the only hope then is that combined with other components of the COC protocol, it has benefit.

  • bsandra
    bsandra Member Posts: 1,031
    edited December 2021

    Dear Nicole, Husband, unfortunately results were expected...

  • kitkit
    kitkit Member Posts: 29
    edited February 2022

    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

  • simone60
    simone60 Member Posts: 952
    edited February 2022

    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.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited February 2022

    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

  • laling23
    laling23 Member Posts: 1
    edited February 2022

    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

  • simone60
    simone60 Member Posts: 952
    edited February 2022

    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.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited April 2022

    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

  • BevJen
    BevJen Member Posts: 2,341
    edited May 2022

    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.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited May 2022

    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...

  • intheclub
    intheclub Member Posts: 20
    edited June 2022

    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

  • nicolerod
    nicolerod Member Posts: 2,877
    edited June 2022

    Take Reishi and turkey tail mushroom

  • mariana68
    mariana68 Member Posts: 1
    edited June 2022

    Попробуйте сок из бузины,он поднимает лейкоциты.и сырой яичный желток.

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