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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • simone60
    simone60 Member Posts: 952
    edited October 2019
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    Hi,

    yes, you alternate months with doxy. Both dox y and meb are 100mg.

  • AllyBee
    AllyBee Member Posts: 99
    edited October 2019
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    Thank you Simone Smile

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    ok ladies.... Xeolda...yup so that is the verdict. I guess if there is a thread here I will go there. I don't want to sound like a pessimist but...I just feel like more people fail on that...than succeed.

    So my biopsy did not test for FGFR, ESR1 or P13K....that would need a foundation testing again and chances are they will not cover another test in the same year since my last one with them was in April. My doctor said right now the main concern was if I changed to HER2+ or TNBC which I have not. She said the 4 other oncologists on the tumor board all agree they need to stop my cancer now..or at least try with something they know can do that....Chemo. She still wants to consider me for 2 specific trials (we talked about these before my cryoblation) however, not just yet bc again, we need to stop this not "see" if something will...but with something that we are more positive will. She is still going to try and send out to have the sample tested for those mutations I listed above. The testing that Hopkins did on the sample is not like Foundation Testing where they tell you what mutations is has and what meds work against those mutations.

    For my body weight and height I technically could start the Xeolda at 2600mg / day but we are going to do 1000 mg morning , 1000 mg night so 2000mg a day to start for 2 weeks on ...1 week off and then we can change that to 7 days on 7 days off or what ever might work better depending on how I do. I will start on the 15th. The Marine Corps Ball is the 14th and I don't want to feel awful for it so 1 more week is ok she said. Plus I have to consult next week about getting my ovaries out..yes that is happening and I am so glad it is.

    I did find out (Saulius) my KI-67 dropped now... 5-10% from 70%....so there is something going on with the tumors... on a side not she agreed to prescribe me the statin...lowest dose but still I am happy that is another pathway blocked! The good thing about Xeolda ...it is NOT processed by the liver...but instead by the kidneys so hopefully my liver will be able to cope with the supplements and off label drugs.

    So if anyone has any info about what drugs through the Jane protocol cannot be taken with Xeolda please let me know....

    Thanks,

    Nicole

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    My wife had great success with xeloda. Her only regret was that she took too high of a dose initially, and suffered more side effects than she would have, had she known (and there is no real way to know) that a lower dose would work well for her. I think the 2000mg/day sounds like a really good plan, and one that will have a much lower likelihood of being intolerable. My wife had good energy on xeloda and we went for many long bike rides. We would have done long walks, but her feet in shoes and socks got sore quickly. She did however enjoy long walks by the ocean wearing flip flops. Xeloda is a Cyp2c9 metabolized drug, so that is the enzyme pathway that you have to make sure that no supplement inhibits. Oil of Oregano, curcumin, and green tea all inhibit it to some degree. So those you should save for your days off xeloda.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband I cannot thank you enough for all that info especially about the supplements...I am literally burnt out right now I had a little bit of a cry yesterday just being overwhelmed we were trying to work on finishing my metro map. So when we found out today that treatment was going to be X...I was like...just getting a headache trying to figure out which supplements I couldn't take...so again..thank you!!!

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, I responded to your update on a few other threads and am wishing you the best with "Madame X". I did continue to drink green tea on Xeloda and it worked exceptionally for me. I would suspect the green tea interaction may be more of an issue with green tea extract and not the actual tea. The whole supplements thing can be such a blessing and a curse. It is certainly overwhelming and confusing. I feel like it is somewhat of a crapshoot and I just pray that I am doing more good than harm in all of the supplements I take. It would be really demoralizing after spending all this time and money on supplements if they didn't actually help at all and in fact did some harm.

    After some delays in receiving my COC protocol medications, they finally arrived yesterday and I started them today. I hope these can do something. It appears I have started to build a resistance to my current treatment line and am hoping this will help keep things under control until I get on my next treatment line. I have a PET scan next Saturday but given the continual increase in liver enzymes, alkaline phosphatase and tumor markers, I pretty much know it will not be good. I also have been having a few telltale signs of liver progression - pain in my back from a nerve that gets pressed upon when I progress and my abdomen feels cramped like there is not enough space for everything. Feeling a bit sick thinking about it as I don't have any good options and am pretty much just making up treatment lines from here on out as I have basically taken all of the standard treatments. All I think about is my 4 year old son.

    One question for those of you on the COC protocol - if you have elevated liver enzymes, did your prescribing doctor either tell you not to take the statin or lower the dose? I was told not to start the statin until the COC MO had a chance to review my most recent liver enzymes from last Friday as she was hoping they would go down. I uploaded them Friday night and have not heard anything back. I emailed the COC this morning and received a prompt response that the rep was checking with my COC MO and would get back to me shortly. No response after that. Given that I am likely progressing right now, I would like to start the statin immediately. My liver enzymes did rise again and are high for me personally but are not really that high (ALT is 2x upper limit of normal and AST is between 1.5X to 2x upper limit of normal).

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL...thank you so much for your replies. I agree about hoping the supplements work and are doing more good than harm. I am one of those people (my husband has started calling me MURPHY...for Murphys law) yup thats me...when something works great for everyone...doesnt work for me...this is literally the story of my life....especially when it comes to healthy things...ughhh you have no idea. I will pray for me and you to be responsive to the supplements and off label drugs.

    Ok..ref the Statin...so when I asked her for it I said just give me the lowest dose and we can see how I do, I promise if anything looks bad I will stop...so she agreed BUT..she asked me not to start it until Friday (tomorrow) after she sees my blood work...which I am thinking the liver is going to be off the charts from the cryoablation I just had..which btw I thought I was feeling better yesterday..and now this morning PAIN AGAIN..ughhh.. Probably because I cheated last night (bread)...ughhh and dairy free ice cream..or could just be my supplements..because the pain came after I took them...hrmmm..but I only took a mushroom complex and metformin (which that I was fine with before the cryo) I never took the mushroom complex before the cryo so it could be that...

    Keep me posted how you are doing on here...btw..I have the fen ben...but I am going to intergrative dr. today and asking for a whole list of stuff...lol to include the mebdazole since there is a shortage on the fenben.

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    Nicole,

    After my microwave ablation, then two numbers that were elevated were the alkaline phosphatase and my CA 27-29. Both have come down over time. It seems that as the liver heals from the ablation (I'm sure it's the same with the cryotherapy) there are a few glitches. Hope nothing else shows up with you.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Bev.

    So I had my appointment with the integrative dr. Right now I am only going to fill and start taking the Low Dose Naltrexone to block the hedgehog pathway. She is definitely willing to prescribe everything else I wanted , the Doxy, Medbedazole, Dypyridamole, and a few others but we all me, her and my MO want to see how I do on the chemo first make sure my liver is coping ok. I am going to do the IV Vitamin C on off week of chemo.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    That sounds great Nicole. Its wonderful that you have found someone who embraces complementary therapies.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband yes it's great...it broke the bank quite a bit..but hey I can get almost all the scripts through insurance when the time comes so that will save a little.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Does anyone know about not taking Statin with Berberine..and I do not mean at the same time of day? Someone on FB claims the COC says you cannot take berberine with statin but I cannot find that anywhere on line... I found this...

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58712...

    But nothing that specifically says it could be harmful or kill you etc....or WHY? It seems like Berberine can lower cholesterol (from what I have read) so maybe they are thinking it kind of does the same thing..like they say about berberine and metformin? However, you can take both of those just NOT TOGETHER.... My statin on the bottle says to take at bedtime? I usually take berberine at dinner.

    If any one has any info please let me know...

    Thanks,

    Nicole

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Nicole, berberine is the natural version of metformin...I don't know why it wouldn't work with a statin...one manages glucose, the other cholesterol...

    I take metformin and statins together because I take metformin with my meals.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Frisk! Maybe I will take the metformin at dinner and take the berberine in the morning...then take the statin with the metformin but it still baffled as to why it says take at bedtime?"

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Maybe because statins could produce cramps in the legs...therefore if we’re already in bed, it’s less likely to be a problem. I’m taking only 40mg statin because I never had a cholesterol problem and we do need good cholesterol, it serves many functions.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Mine is even less...its 10mg...but I told her to give me the lowest to start.

    I cannot believe this...but my blood work is AMAZING..actually I can...because I have been off cancer meds for a month.. my bilirubin...was 0.9 the range 0.1 - 1.3 this is like amazing...all my levels were normal...its crazy. but ya know what...I didn't take any supplements before I had the blood drawn...

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Having normal blood levels is great news! Congratulations

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Frisky!! Yea I am glad about it.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Nicole, when I had my COC MO appointment, the MO did say not to take berberine as it interfered with the mechanism of action of atorvastatin (Lipitor), the statin used in the COC protocol. I didn't ask any further detail about it because I don't take berberine but I got the sense that it makes the statin not work or not work so well. Wonderful news about your bilirubin and blood levels!

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    Nicole,

    Also, I think that if you swap out the metformin to twice a day, rather than the berberine one time and the metformin one time, that was the dosage that folks were taking who are on the COC protocol through COC. If you do that, then you shouldn't have to use the berberine, I would think.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Pondering dosage for mebendazole. Any idea how they came up with 100mg daily? I see that for tapeworms, the human dosage is 400-600 mg / day. The Johns Hopkins trial for glioblastoma has the patients taking 500 mg 3x a day.

    I am asking the same questions wrt fenbendazole. So if the recommended dose is 220 mg/day, and that is the amount for a 10 lb dog. When you do the conversion for dog to human dosage, the ratio is 1.8. So the fenbendazole dosage for a 10 lb dog would be for an 18lb human. So, a human dosage for a 180 lb person would be the same as for a 100 lb dog, which is significantly higher than the 220mg/day. I know the concern is toxicity, but thinking about just about every drug I've seen tested against cancer cells, whether its in the petri dish or in mice, the response is typically dose dependant. So my question is, are we significantly under dosing on these two drug?

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Husband..I personally think the COC is under dosing to be safe. There are MANY people who have upped the Fenben dose either by taking 5 days on 2 days off or doing 2 of the 222mg packets a day for 3 days on 4 off.

    Bev...I wasn't really concerned about the Metformin and Berb....I know I can take both of them...just not at the same time...someone said on FB that COC said you cannot take a statin with the protocol...however...I cannot find anything about that on line. The closest thing I did find this

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC58712...

    but mostly my take away from that article is that berberine can have the ability to lower cholesterol so it would seem you should not take it at the same time as the statin...kind of like how we do not take the berbine and the metformin at the same time but we do take them both. I could probably leave off the statin if I wanted or do what you said and just take the metformin 2 times a day, the statin 1 time and eliminate the berberine...in a way that would probably be the better thing because I do not pay for those and I pay for the berberine. I just remembered that I didn't mention...my statin is only 10mg...so then again trying that on it's own...yea...I don't think will be enough...so I don't think it would be to have the berberine with it, again, not at the same time...but 1 in morning 1 in evening.??

    Husband...right now I am on the fence of doing the Mebedazole (which I will be getting a script for if my liver numbers are good on the chemo) and the Doxy the way that COC has it be done. I do not agree with taking doxy for an entire month every single day while in the kill phase...I don't think it is necessary and I think we risk becoming immune. I understand that is why the alternate..but still alternating every other month and taking ANY antibiotic for 30 days straight is a risk of resistance. I think I would be open to 3 weeks on or alternate 2 week of one then 2 weeks of the other...I know that I want to do Mebed. during the week of Vitamin IVC.

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    I had a 3 month pho e chat with them. They advised me to increase metformin to 3 tabs daily and mebendasole to twice a day.

    As far as I understand the most important pathway ( mtor or something like that) is blocked by metformin. Just for clarity - metformin does not work by lowering glucose in the blood ( although probably it is part of his action) but by inhibiting that pathway which differs between cancerous and healthy cells so that it affect just cancerous.

    re doxycycline - they say at dosage of 100 mg it does not have bactericidal action. Kind of ... There was study which someone mentioned somewhere which talked about doxy increasing effect of chemo or making it possible to affect cancer stem cells...

  • snooky1954
    snooky1954 Member Posts: 850
    edited November 2019
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    Husband, My level of comprehension is soooo below yours. But, fool that I am, I diving in. Since animal studies are for parasites, and we take it for a completely different reason...….hum I wonder when Joe T found out about this how long had the dose been in effect.

    However, just don't know. Most of us started this in May and are seeing no results. My TMS have been steadily dropping but, I don't think mine are reliable.

    I hate this!!. I pay the doctors damn good money and they know nothing.

    The stress of figuring this out on my own is really starting to take it's toll.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Anthoerone... Yes the Mtor pathway is the Glutamine pathway.... I take (and most people do) Metformin and Berberine to block this pathway as berberine also blocks other stuff (as mentioned above it does the job of a statin as well not as high as a perscription dose of course)

    Can you please post the info as to which you see to use during kill phase of chemo- Mebendazole or Doxy.....

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    I found this little snippet about mebendazole in one of the descriptions of the Johns Hopkins clinical trials for mebendazole:

    In addition, a recently published case report case report from the University of Michigan documented successful long term control in metastatic adrenocortical adenocarcinoma using mebendazole 2. Mebendazole was well tolerated at 200 mg/day and used as the sole treatment after the patient failed other chemotherapies.


    https://clinicaltrials.gov/ct2/show/NCT01729260?te...

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    Nicol , is not all chemo "kill phase"? So one just rotates doxy and mebendasole and hopes for the best..

    Snooky , why do you think it is not helping? I understand TM going down is not a proof that it is but it is definitely not a proof that it is not...

    When did you have your last scans - August ? As far as I remember they were ambivalent with probably overall slight improvement... or have I missed something?

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    Husband11,

    Hopkins is doing a bunch of trials on different things -- they are also doing a trial of IV mistletoe for breast cancer -- the kicker is that you have to be there three days a week for the IV stuff. Interestingly, that trial is being funded by a nonprofit, not by a drug company. No surprise there.

    The mebendazole trial is not for breast cancer, but I think it's good that they are testing it anyway.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Bev thanks for the heads up that it's not for BC.

    Husband thanks for posting that...anything showing Mebendazole in study or trial to me, is good for MO to see.

    Anotherone...yes all chemo is kill phase..however chemo doesn't go on every day with no breaks.... So for someone like me that is on Xeloda and does 2 week on 1 week off...I don't know how long that will be for...so I am thinking I need to consider my 2 weeks on as the kill phase..then the 1 week off the starve...and I will do the Vit IVC then what I was asking you specifically about is that I thought one was suppose to be used during chemo and not the other..but I think I was thinking about the Vit IVC bc Jane originally said to do the Doxy during IVC then she changed that and said no...do the Mebedazole during IVC

  • BevJen
    BevJen Member Posts: 2,341
    edited November 2019
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    Don't know how many of you read the Chris Woolams newsletters from the UK -- he's the biochemist who talks about cancer a lot on his Cancer Active site.

    His latest newsletter was interesting -- he had an article about building an off label arsenal for cancer. Here's the link for those who are interested:

    https://www.canceractive.com/article/an-offlabel%2...