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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    I just read this in Janes book and I think it's pretty important...especially wanted to share with you Saulius :

    Let me summarise: in cancer, ROS (oxygen free radicals) are good as these kill the cancer cells, glutathione (antioxidant) is bad as it keeps the cancer cells alive. If you're healthy, it is the opposite. Almost everyone seems to confuse this point. Compounds for cancer prevention are not equally beneficial for treating active cancer. They are two separate situations entirely. There are major natural cancer organizations out there who mean well but have yet to realize this fundamental flaw when they recommend patients take N-Acetyl Cysteine (NAC), a precursor to glutathione, to help treat their disease. NAC, low dose oral vitamin C – at an antioxidant dose, vitamin E and CoQ10 all recycle the master antioxidant glutathione. All are to be avoided during chemotherapy treatment. NAC is also found in whey protein and bone broth. Bone broth is great for healing the gut but choosing the right time to take this becomes paramount so that treatments don't cancel each other out. Taking glutamine with glucosamine is in my view a better strategy to heal the gut during chemotherapy. However, if at some point you need to boost white cells, detoxify of harmful metals (NAC is good at this too), or detox the effects of too much chemotherapy, then seek advice. A short burst of NAC may be beneficial.


  • bsandra
    bsandra Member Posts: 998
    edited October 2019

    Dear Nicole, thanks! What I want to stress is that while my wife was on chemotherapy, we were not taking anything, except for CBD/CBDA which crazily influenced her blood labs and let us get to NED with 12 chemotherapy (Taxotere - docetaxel) cycles. Once she was NED and stayed on HP only, we started taking the supplements from the supplement list I posted, NAC including. After she relapsed in her left breast, we once again quit all supplements except for CBD/CBDA, and had another 6 cycles of docetaxel. Then after chemo was done we started taking same supplements again. The main question here is: can you take antioxidants like NAC, low dose VitC and others, while you are on maintenance therapy (which, theoretically, happens for the rest of your life), like monoclonal antibodies (-mabs), antiestrogens, CDK inhibitors, etc., and especially when you are NED? I for sure agree you must not take them while on chemo. For example, you were on hormonal therapy, so is it considered chemo by J.ML/COC protocol or not? For me "chemotherapy" in C treatment are therapies that are not targeted but hormonal treatment is a targeted treatment. If any treatment (including targeted) is considered chemotherapy by J.ML/COC, than we must clearly state that any stage IV patient cannot take antioxidants. I have not read that book that is why maybe someone could answer this question? Thanks a lot again and sincerely, Saulius

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Yea I think she means actually Chemotherapy. I don't consider Ibrance "Actual" chemotherapy...Xeloda...that is considered ORAL Chemo so I guess that would be actual chemo therapy. I don't think I would do the IV VIt C except for a period after the Chemo.

    On a side note I have appointment with New MO tomorrow I hope she is good :) .

  • bsandra
    bsandra Member Posts: 998
    edited October 2019

    Exactly, Xeloda is chemo, or that regiment that kills fast dividing cells, not distinguishing between them. You were on Ibrance, which is a CDK inhibitor, this is why I thought NAC would be good for your liver. But maybe not, as it repairs cells? Ehm... I wish you all the best for your appointment! We also have our appointment tomorrow for HP infusion. Last time she said "we'll see if these additional things will prolong your survival" which hurt us a lot.. we'll see what happens this time, as last time I wrote her a very sincere letter asking to believe in us, help us, and not to say like that... Saulius

  • sbaaronson
    sbaaronson Member Posts: 121
    edited October 2019

    Hi All,

    I had a brief interruption in my COC protocol after getting 6 weeks into it, 1 full month on Mebendzadole and 2 weeks into the Doxycyline portion when I developed an ear infection and had to stop the Doxy and go on Augmentin for 10 days. In any event, I can say my TM draw showed a drop of @ 10% after the first 30 days on the following pharmaceuticals: Metformin, Afinitor, Extemstane, Mebendazole, and Avorstatin. It's impossible to know if this would have happened anyway, and my liver enzymes did rise due to the Avorstatin. Fast forward to this month's blood draw, on only Metformin, 19 days of Doxy, and A/A and my markers came back up that 10%. I am now doing the following: A/A, Metformin + high dose, bioavailable Quercetin, Doxycycline + 4000mg of Vitamin C in gel form, 6000mg Turmeric in gel form 3 weeks on, 1 week off, 900mg Tocotrienol from Annatto, and a few other supplements which I am happy to share if you are interested. I told my medical oncologist what I am doing, but the truth is I didn't ask. I guess I am my own experiment. I don't expect to cure myself, I just want the best health possible for as long as possible.

    I read PubMed once a week and review studies that I think are worth pursuing and often send them to my oncologist. To some degree, the medical community follows the science, and I am happy for that roadmap. However, I know it's not enough today, perhaps in the near future it will be - SO HOPEFUL!

    Please see the links below:

    https://www.ncbi.nlm.nih.gov/pubmed/31002656

    https://www.ncbi.nlm.nih.gov/pubmed/28978032

    https://www.ncbi.nlm.nih.gov/pubmed/29678660

    Best,

    Stacey

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    stacy thanks for sharing that. I dont know if you have been following my situation but we believed I just progressed after only 5 months on Ibrance letrozole and faslodex. I am meeting a new MO tomorrow to see what she recommends. I dont want to do vit c until if/when I do and finish chemo. Jane mentions in her blood she avoids all citrus even fresh fruits during treatment. My husband and I are probably half way through the book and with the help of awesome people getting the list together and excel spread sheet. The one thing that bothers me is all the conflicting info on supplements.....green tea extract..curcumin..etc. I find it overwhelming and discouraging at times.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    saulius that's great you told her that. Best wishes tomorrow keep me posted!!!

  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    Nicole, as I understand it, she's just listing all the various medications and supplements that blocks the various pathways cancers use to spread. The idea is to block all of them at the same time....what you chose is ultimately up to you, however, the COC has narrowed it down to 4 medications...the menbendazole, the doxycycline, the statins and the metformin. Left uncovered is the Glutamine pathway...that’s a real bitch to figure out...

    Anything else after that would be targeted to some other mutation or specific pathway, but of course, don't expect anyone to actually know what those are...hitting the mark is art and luck...based on statistics, science and doctors are one hundred years behind...

    How do I know? Because of Jane's experience and many others that survived stage 4 in spite of what their doctors were doing...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    frisky yes I agree. The part I am up to in the book she actually lists what she is taking at that point in time. Yes she does mention what blocks all the pathways..but even people with the ER+ on FB some take stuff like antioxidants some wont. There are articles and research on both sides some says it's great some say dont take. Confusing...ultimately up to the individual . Yes you are so right about the Glutamine pathway though. That's like WTHeck?!?!? Lol

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited October 2019

    Glutamine is best attacked by a vegetarian vegan diet. Highest glutamine foods are meat, poultry, dairy etc. The glutamine in vegetables is lower.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited October 2019

    oops wrong thread

  • sbaaronson
    sbaaronson Member Posts: 121
    edited October 2019

    Nicole,

    I haven't been following your course of treatment, but I can tell you I progressed 6 months into Ibrance/Faslodex. MY MO took me off it and I have been relatively stable on Afinitor/Aromasin for the last 5 months. My disease is primarily in the bones, although I do have some lymph node involvement. I haven't been scanned for about 5 months. My tumor markers seem to be holding, my blood work is good, and I feel well, so my MO is saying wait. I personally believe that hitting the cancer from as many different ways as possible makes sense, that's the story behind HIV control, it's a cocktail of drugs.

    I am still running, lifting weights, and doing everything I did before. I was really scared after hearing the Afinitor side effects but have found it to be an easier drug than Ibrance.


  • bsandra
    bsandra Member Posts: 998
    edited October 2019

    Dear all, meeting with our MO went like a charm today. She smiled, she was welcoming and, I think, happy to see us smiling too. Ehh... what a difference sincerity and one beautiful letter can make!:) My Sandra is getting her 37th HP infusion and getting her 23rd rads today, and I pray we comeback to NED - our ultimate goal at the moment... Wish everyone a nice day. Sorry I wrote here - will come back to FenBen thread...

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Saulius...so glad the visit went well!!! I am glad you posted it here.

    Hope you have a great rest of your day!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Sbaaronson thanks for the post. I am glad to see you are doing well on the A/A. I will see what the doctor says today about treatment plan. I am concerned because I started taking berberine this week..and ALA and I think it is making me consitpated and I already have an anal fissure and need to go to the bathroom everyday...I am worried I will have to stop the supplements ...

  • Misstic
    Misstic Member Posts: 50
    edited October 2019

    I jumped on the COC protocol boat last summer.

    Before that I did the keto diet during chemo with a great success (100% tumor response with my 6 metastasis in my skin and parenchyma). Nicole explained it perfectly : no antioxydant during chemo. Right after the chemo, I started a metabolic protocol tested in France with success : ALA + Garcinia Cambodgia + Keto diet, this protocol mimicking the effects of metformin and atorvastatin.

    Now I use Doxycyvlin and Fenbendazole + the protocol mentionned above.

    To make the story short, the RO made an error on me forgetting a zone on my chest wall. So I have a high risk of skin metastasis recurrence there.

    My two last Petscan showed me NED (the very last one 2 days ago).


  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    congratulations Misstic! So happy the protocol is working for you. Thank you for sharing the good news with us, may you continue to be cancer free

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Misstic AWESOME!!!! WHOOOO HOOOO as soon as I start chemo I am starting the fenben!!! and the rest! If you have been following what's going on with me I just posted a huge update in the Ringworm thread, Ibrance thread and Liver Mets! I plan to chat with you a lot as soon as I start :)

  • HLB
    HLB Member Posts: 740
    edited October 2019

    Is anyone working with dr Zhang on the COC? I have a phone consult lined up with him on the 15th. Anxious to get started on the protocol. Best wishes to all. 

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    HLB I never heard of him...wait......I think i have..lol not sure now...please tell me about him and definitely let us know how it goes! I am excited for you!

  • HLB
    HLB Member Posts: 740
    edited October 2019

    Thanks Nicole, I will keep you updated. I sure hope this works. I feel like doctors have given up and think I should just wait to die or something. They act like I'm lucky because I've had Mets for 7 yrs. I don't know how to find a good onc. They all have seen it all and seem to just expect us to give up when standard treatments don't work. 

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    7 years tells me your body is strong woman!!!!

  • Frisky
    Frisky Member Posts: 1,686
    edited October 2019

    HLB, I don’t see the list of chemos you could be treated with...what’s up with that?

  • HLB
    HLB Member Posts: 740
    edited October 2019

    I never could figure out how to list them. I have been on all the pills and abraxane. I know there are a lot of other chemo. I thought I should be on one to get things stabilized. Well I am starting navelbine Monday but I really wanted advice from the onc. For her to tell me why it's better to be on Verzenio waiting waiting waiting for it to kick in while draining a liter of ascites ever day. She was just irritated by my asking and said "ok we're doing chemo". Really frustrating and I don't feel confident abt it. 

  • HLB
    HLB Member Posts: 740
    edited October 2019

    Well I cancelled the chemo. Tomorrow night is my coc consult and I will hope he has an idea of if I should be on chemo or not. Just not confident with my onc and worried that when I drain I become very weak and have a hard time staying hydrated. Just going to stay on Verzenio and hope it starts to work soon. To add to the misery my big toenails are extremely painful, ingrown or something lol. Have a podiatry appt tomorrow. I think they will have to cut the sides off each nail. Thanks for listening. Hopefully will have some good options tomorrow night!

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Has anyone in the CO C protocol had issues with low p!atelets? My counts dropped quite a bit last month when I started doxy.


  • anotherone
    anotherone Member Posts: 545
    edited October 2019

    nope mine have been fine

  • sbaaronson
    sbaaronson Member Posts: 121
    edited October 2019

    Simone80,

    My platelets are fine as well. Have you checked to see if that is a listed side effect of the Doxy? I find it gives me headaches.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited October 2019

    Sbaaronson...are you on 100mg 1 x a day of doxy everyday for a month then off?

  • simone60
    simone60 Member Posts: 952
    edited October 2019

    Sabaaronson, Yes, low platelets are a side effect. At least that is what I found on the internet. Not sure if the info is accurate. I also added niacin and magnesium supplements lately. I'm going to stop those 2 and see if that helps.