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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    My wife had the opportunity to get her tumor markers tested quite frequently while she was on xeloda, and the tumor markers continue to drop while on the drug, and even at the end of the week off. It must put them on a path towards death, mortally wounding them, because the markers drop as much after a week on, and they do during the week off. I found that very interesting.

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Hi BevJen,

    Would you repost the link? I got a error when I clicked on it.

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    I just got home from my monthly appointment. My ca15-3 has steadily been going down since I started coc with Civ and It is now at 9.5. I take the c iv with doxy which seems to be working.

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    I don't know what went wrong with the link, but here's how to track it down:

    go to canceractive.com and search for the Oct. 26, 2019 article on "Building an Of-Label Drugs Protocol." That should work, hopefully.


  • cure-ious
    cure-ious Member Posts: 2,745
    edited November 2019
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    Thanks BevJen,

    I thought it was interesting to recommend metformin before bed- it is reported in the literature to be about 100x more efficient on fasting cells

    OTOH, they have no more recent data on Celebrex since 2009?! that's crazy..

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    My internist prescribed metformin for me about 6 months ago. I have been pre diabetic for a number of years, so I asked her if that, plus the stuff I had read about breast cancer and metformin, would work for her to prescribe metformin for me. She did so willingly, and her recommendation was to take it at night. So very interesting!

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Simone, that is great..but now it makes me question Jane changing her statement saying not to do Vit IVC with the doxy but to do the mebedazole...hrmmm

    Did you see that?

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Thanks BevJen. It's a very interesting article. There are a couple of drugs I haven't heard of listed within the article.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband11 if you have any thoughts please let me know....So anyone have opinions about the IVC with doxy vs Mebendazole..bc here is what Jane said when she changed her mind:

    On June 29, in response to a thread created by Denise Haire, Jane McLelland wrote: "I recently came across this article which makes me concerned now about adding doxy to a kill phase. I am thinking MBZ best with high dose IVC and Doxy best during starve phase only (liposomal vit C).
    You need to optimise H2O2 if you're going to do it.
    https://www.ncbi.nlm.nih.gov/m/pubmed/31213768/".

    https://www.ncbi.nlm.nih.gov/m/pubmed/31213768/?fb...

    corrected link


  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Thanks BevJen, that’s a great article that we can all use to guide us...

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Hi Nicole, I just read the article you posted. I'm not sure, that is over my head.

    Curious,

    What do you think?

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Interesting about metformin working much better at night. The COC specifically indicated that I should take it in the morning and take atorvastatin and mebendazole at night. I am curious why they do it that way . . . Does anyone know?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    i thought someone ...Anotherone or Simone...cant remember...someone said COC said not to take STATIN with the protocol??? BTW JFL my Lovastatin on the bottle says take at bedtime.....

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, I am still on hold with the statin - is that what you mean? I was told by COC MO my liver enzymes need to go down first although they are not really that high (1.5 - 2 times the upper limit of normal). Not sure the enzymes will be going down as they are tracking slightly in the other direction, likely because I am progressing on my current therapy. They have been slightly elevated for a while now. Last week, I asked a question directed to the MO about what happens if my liver enzymes do not go down - will the statin be cut out of the protocol for me - but no response to that email question. However, today I received a passive-aggressive email from a random, unnamed nurse addressed to me and my DH at my email address (which is weird - DH is not at all involved in the details of my treatment and I don't even recall providing his name but must have done so). I guess the nurse assumes I must be completely helpless and incapable of keeping track of my own medications and making my own decisions about my medical care. If she read my file, she would know that is not the case. The message said something to the effect that she wanted to confirm with my DH and me how I am doing and make sure I haven't started the statin and to keep uploading my bloodwork to the COC site to ensure my own safety. However, no response to whether or not I will ever be able to take a statin. She copied and pasted a prior response from the COC MO that I already received last week telling me that based on my bloodwork from 1.5 weeks ago, I was not to start the statin at that point. I don't know why the whole message rubbed me the wrong way and I had to hold off responding to avoid sending a nasty response. I just feel like if I am paying $800 for a 30 minute consult with an MO, that I should at least be afforded to ask and receive responses to basic questions about my treatment plan and not simply a lazy, recitation of a previous response I already received from a clueless nurse who couldn't be bothered to read my file. If I were not in a position to be worried about progressing right now, I may not feel such an urgency but I don't really have time to waste right now.

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    I take mebendazole with lunch and the statin at bedtime.

  • thrivingmama
    thrivingmama Member Posts: 133
    edited November 2019
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    JFL - I can't believe you were treated like that! Beyond frustrating and totally inappropriate.

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    wow so many responses

    Nicol , I do not go into that much detail ( when precisely mebendasole or doxy) because it is too complicated for me to understand and decide and because I do not think it is critical for my survival (I may well be wrong !)

    Re timing of metformin - after 2 weeks of ine tablet I was told to take 2 so by default it happens in different times of the day. 3 months on I was told to take 3 so there is one at bedtime anyway. That is when I remember and bother taking them - I feel sick and tired so often I just do not get to take tablets , any of them half of the time nowadays ..

    Good to hear about markers going down for a few of you , I sometimes wonder whether I should be doing chemo at all destroying my body or give a chance to herceptin , perjeta and all repurposed drugs to work - surely doing it quickly with chemo is not necessarily the best way...

    JFL, I would have been rattled by that response as well !

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL maybe the nurse was new and thats why she was acting that way trying to cover all her bases? I will look back in this thread..its either here or Liver Mets or Ringworm someone just said last week that COC told them not to take statin...maybe it was you, I didn't think it was. Its so strange...my bilirubin was just 0.9!!!!!! PERFECT...yup my MO called me at home friday and was like.."Nicole your blood work is beautiful!!!!!"..lol I was like "Of course it is...I have not been on any cancer meds for a month!!!!"....God only knows what its gonna look like once I start Xeloda..lol

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Nicole, I can't get that link to work to the article about intravenous vitamin C. I really don't feel qualified to have an opinion on its suitability at one stage of treatment vs another.

    That is great news Simone. What were your tumor markers prior to starting the IVC and COC protocol?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband sorry I really wasn't expecting you to like give me advice as if you were a doctor and that I was going to take it like a written rule just really wanted your take or thoughts...no worries :)

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Hi Husband, they were never that high. They hovered in the 20s.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    That's a good drop then Simone. Can you share more details as to when you started in Ibrance / Letrozole, how that treatment was going, where tumor markers were at, and when you started on COC protocol? I'd love to hear that definitively the COC protocol was making a difference.

    Nicole, can you send me or repost the link to the article about iv c?

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    I read the article about low dose doxycycline inhibiting hydrogen peroxide induced oxidative stress in human vein grafts.

    My thoughts: There is a distinct possibility that cancer cells differ from such healthy tissue. I read a suggestion that cancer cells lack sufficient levels of catalase, which neutralizes hydrogen peroxide. If so, then that would explain why IV vit C is good for healthy cells, but bad for cancer cells. It suggest cancer cells are certainly different in their reaction to hydrogen peroxide. I think would side with Simone who has achieved results (in spite of, or perhaps benefited from ) doxycycline and IV Vit C combined. That assumes there is not further research suggesting doxycycline reduces hydrogen peroxide in actual cancer cells (as opposed to vein grafts).

    I'd put more weight in a real life example, than purely theoretical, and not sweat it so much about the timing of the IV C, but that's just my amateur opinion.

    A study on the relative LD 50 dose of vitamin C to cause oxidative death of various cancer cell lines suggest MCF-7, a common ER/PR + cell line is highly susceptible to oxidative stress. So that is a good indicator that IV Vit C would have good potential against typical breast cancer.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34049...

    Catalase levels seem to indicate the resistance of cancer cells to vitamin C.


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34049...

    Research showing that in mouse livers, the addition of doxycycline helps restore catalase levels that are lower by acetaminophen.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC67067...

    Can it do the same thing to cancer cells? Is the restoration of catalase levels lowered by acetaminophen, the same thing as raising catalase levels in cancer cells? If so, it the effect strong enough to save the cancer cells?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    See...I just knew you would make a good point!!!! Thank you.

    I wanted to let you all know...I am scheduled for surgery this upcoming Monday...getting ovaries out...so I will not be starting Xeloda until after that. Can you believe the Oncologist/Gyneocologist that I consulted with at GWU today actually wanted to do it Thursday...I looked at my husband and we both were like NOPE!!! The Marine Corps Ball is Thursday!!!! LOL My poor husband needs to celebrate his Birthday for sure this year and I wouldn't miss it with him for anything! :) So Monday is the day for the surgery.

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited November 2019
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    Nicole, the Marine Corps Ball is THE event of the year (promotion ceremonies/wetdowns not included)! It’s hard to explain...

    Glad you both get to celebrate!

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Hi Husband,

    I started I\L last Jan and it was going well and still is. I had a clear scan mid Sept but my TMs hadn't improved.

    I started COC in Aug, not sure on dates. I read in Jane's book to pair IVC with doxy, after taking it for 2 weeks. So I scheduled 2 IVC on my 3rd week of taking doxy which was early Oct.

    Octobers blood draw showed a decrease in TMs and another decrease in Nov.

    I should be starting doxy again in about a week so I plan to schedule 2 more IVC. My Neuropathic doctor wanted me to do it weekly, but I just can't afford that.




  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Thanks Simone, that does strongly suggest that your additional treatments, the COC and IV C are doing something more than the Ibrance / Letrozole could. Thanks for the details.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Is it possible to do COC without informing your oncologist? Will the information that COC requires such as blood work and scans require that it be sent directly from your oncologist? Or will the written reports we receive as a patient suffice? We do not want my wife's onc to know if she goes with COC.

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    it is possible. You either are given the results of your bloodwork or you can ask for them without explaining the reason. Many people do - just so that they have a file at home in case it is needed. If you are on chemo you have bloodwork done far more often that COC requires. If not that may be an issue- you would have to find who would do your bloods then 3 monthly.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    My wife does get her written blood work reports, which are done regularly. So we could provide them with copies. But how about scan? We also get the written reports from the radiologist. Would that suffice? I can't imagine COC has the staff and time to examine actual MRI's for instance. That's painstaking detail work. Not even our oncologist offers an opinion on the MRI, they rely on the experts, the radiologists, who prepare a written report, which we get copies of.

    So to be clear, there is no requirement that we inform or get consent of our Oncologist?