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Jane McLelland protocol / COC protocol for STAGE IV members ONLY

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  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    nope. They don't check for it. At least mine have not.

    They wanted initial enrollment scan report - you should have that anyway and then they done need other scans although if they are done and you have the reports they would have preferred you to provide them.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Just an update... I will start the Xeloda now on the 25th...500 mg in the morning and 500 in the evening for 1 week (since I will be post op) then I will go to 1000mg 2 times a day...and my MO agreed to my request of 1 week on 1 week off :)

    Side note please pray I have an MRI Saturday of left femur been having pain in the back side of that... also have CT full scans for base like in 2 weeks.

    I will cross post.

    Thanks ladies :)

    Nicole

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

    Re: information for COC -- I asked this question of another person on these threads who started COC without their oncologist's "permission." She simply gave COC access to her patient portal and they pulled down what they needed and after she changed her password. That's what I'm going to do if/when I start COC.

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

    Another one is correct. You don't need your MO approval. CO C will let you know what they need. They only asked for my bloodwork and last pet scan. They won't contact your mo.

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    That's great to know. We don't have a patient portal where we live. You either leave the oncologists office with the printed report, or request they mail it to you, failing that you have to go to patient records and place an order that can take weeks. We really don't want the onc to know for at least a couple of reasons, 1) They might blame any problem on it and lower their standard of care 2) they might not allow my wife to be eligible for clinical trials.

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

    I did ask the nurse practitioner in my MO's office about this, and she told me "just let us know what you are taking so we can take it into consideration." I have NOT asked the MO directly for just the reasons you list. And I would bet that they wouldn't let your wife into any clinical trials -- I am looking into one right now, and on the consent form, big as life, it says the I am consenting not to take part in any other clinical trials while I participate in the one I'm looking at. COC is registered as a clinical trial.

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

    Can one just quit doing the COC protocol and still be considered? I was just curious

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

    Did you ever figure out when to take berberin along with metformin?

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

    I have no idea. Of course, thinking about Joe Tippens' s story, wasn't he on a clinical trial when he started his fenben? he never told his oncologist until later on.

    If the oncologist only knows the things that you are taking, then I can't imagine that they or a trial coordinator would probe as to where you got the drugs. Also in the consent form it said something like: if you are taking drugs and we cannot find substitutes that will work with our trial drug, then you either have to give up the drug you are taking or else give up on the trial (I'm paraphrasing).

    As a possible answer to this, I asked my MO yesterday if I went on the immunotherapy trial (that I don't think I'll be able to qualify for) and it didn't work, could I go back onto my current regimen -- she said yes.

    Bev

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    Yes you're right, Joe was in a trial. He just didn't tell them what he was taking. Why don't you think you'll qualify for the immunotherapy trial?

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

    That has nothing to do with what I am or am not taking -- while I was talking with the MO, she realized that after I ablated my largest liver lesion (which was 2 cm) in July, I probably don't have anything that's large enough for them to follow regarding progression or improvement in this particular trial. She told me that they like to have something that's 2 cm or better. I think she was assuming that the trial follows the RECIST criteria. My only other metastases, if they are mets, happen to be bone, and for whatever reason, she said they don't like to use bone in this particular trial because "bones are hard to figure out."

    Hey, I didn't make this stuff up -- I'm just reporting it. My MO is currently checking on all of this. I did read that some immunotherapy trials are using alternative criteria rather than RECIST to determine progression, stability, and remission. So we'll see.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Simone i am taking the Metformin with dinner and the berberine right when I wake up, wait 30 min then food. My big concern was about the Doxy and Mebendazole (if they prescribe it)...but I decided to go with Janes 1st thoughts..which is the Doxy with the vitamin IVC...but now things will get crazy because my Xeloda will be 1 week on...1 week off so I may just do 3 weeks of Doxy 3 weeks of Mebedazole.....

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Husband, as a few of the other women mentioned, the COC does not require any MO involvement, consent, etc. When I had my consult, the COC MO asked if I wanted notes sent to my MO and my primary. I said yes to MO and no to primary. I didn't ask my MO but did tell him after this was already underway that I was doing this and asked him to confirm he was not aware of any safety contraindications with my standard treatments. I didn't ask him his thoughts or whether he would recommend it/not recommend it or if it was permissible for me to do, just told him I was doing this. I assume he would say no so why bother. I do like that he is aware for purposes of safety/monitoring blood work but for no other reason. I haven't received a response on the safety question yet but I did my part by mentioning that in my mind. The COC permits one to upload test results from one's own computer files or give them access to MyChart to gather the files themselves. No actual scans needed, just the summary of the most recent.

    BevJen, interesting about giving COC access to one's MyChart account. I upload my files from my computer and select what I give to them. The patient summary on me in MyChart is so out of date, inaccurate and confusing, it would do nothing but bewilder them and likely disqualify me from the protocol. If I read it without knowing it is mine, I would think there is absolutely no way it could be mine. It is awful. It has me listed as currently taking any drug I have taken in the last 6-7 years, many of which are listed multiple times (even drugs my MO ordered for me for side effects that I never ended up needing and antibiotics prescribed by other doctors for short courses to treat a minor respiratory or sinus infection). Based on MyChart, I am on about 5-6 different antibiotics right now, among numerous other drugs. The diagnosis doesn't even mention liver mets - my main issue - but mentions a ton of irrelevant things, such as a fleeting issue I had with high albumin levels (hyperalbuminia) 5 years ago, caused by the 6 bags of saline solution I had to take per day for a few weeks to try to lower my hypercalcemia when I was diagnosed. It is a total mess!

    I didn't think about the whole trial/potential exclusion from a trial issue . . . maybe I will ask the COC not to send my MO any further notes.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Has anyone noticed side effects from metformin such as symptoms of low blood sugar?

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    I did but I am not sure what was the culprit - I had quite limited diet back then. Now I have not checked sugar but I don't feel that light headedness anymore so assume it is ok.

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

    I don't know for a fact that being on the COC protocol through COC would disqualify one from another trial -- it's an interesting question. I just know what the consent form said for the particular trial of an immunotherapy drug that I'm trying to get on. which was that they asked participants to consent to not going on another trial at the same time. To me, it makes sense that investigators probably wouldn't want folks dabbling in multiple trials because it could potentially screw up their results and they wouldn't know why.

    Again, though, when it's your life, you have to do what's best for you. The wrinkle here is that COC has registered as a clinical trial. It seems like a lot of people are taking some or all of the COC study drugs outside of that "clinical trial" and I'll bet many are not reporting that to their oncologists. Not judging at all, just stating facts.

    I would just say that if you think you might want to get into another trial, keep all of this in mind.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    JFL...I have not had any low blood sugar on it but that could also be bc I am having some sugar in my diet...I am not eating as clean right now because my doctor needed me to gain weight..so I have been having more carbs and I have a 1/4 of teaspoon of unrefined brown sugar in my coffee and I did have some dairy free ice cream a couple of times (the content in that really was actually low for ice cream) Ive been good with with not falling low.

  • simone60
    simone60 Member Posts: 952
    edited November 2019
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    JFL,

    My glucose dropped about 10 points.



  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Nicole have a great time at the ball..and may the surgery on Monday be swift and painless.


  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    Thanks Frisky!!!!

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    My wife has been on metformin for 3 years plus now. She is taking it solely for its anti cancer properties. She also takes maitake d extract in a very high dose which is also supposed to lower glucose levels. Neither has caused her any perceivable symptoms of low blood sugar.

    We have a consultation set up for today with COC.

  • JFL
    JFL Member Posts: 1,373
    edited November 2019
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    Thanks, all, for the metformin side effects feedback. I also take maitake extract and 1T of apple cider vinegar daily which may also be contributing. Another question - was anyone advised to stop taking metformin before a scan involving fasting (like a PET)? I am not sure if that is just for diabetics but read about lactic acidosis and started freaking out.

    Husband, I hope your COC call goes well!

  • husband11
    husband11 Member Posts: 1,287
    edited November 2019
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    Just finished the initial call from COC. My wife will be enrolling and doing the consult with their Doctor next Friday. She has numerous scan results (bone, Cat and MRI) pending which we will receive on Tuesday along with bloodwork. That will give us time to forward it to the COC Doc.

    At the price of the COC meds, it isn't going to cost us anymore for the actual meds than it costs us for Fenbendazole / Panacur alone, at the lowest dosage of Fenben.

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

    I read somewhere, I think in the material that they sent me, to stop metformin 48 hours prior to a scan.

  • Frisky
    Frisky Member Posts: 1,686
    edited November 2019
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    Husband that’s fabulous news! It’s good to know that there are doctors out there that are not gouging cancer patients...

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

    Interesting question about the metformin. I wasn't told anything about scans, but when I had my liver ablation in July, which is done under CT guidance, they did tell me to stop the metformin either 24 or 48 hours before -- I can't remember which.

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    I have booked an appointment with a naturopath who was the one who guided Jane and who she mentions in her book !

    He was recommended by a friend who is in medical profession. I did get in touch with Jo's secretary but no follow up was made as I had no energy or time to do all I needed to in a whirlpool of recent diagnosis. I read the book , came across his surname in the book -stil I did not take any notice of it until a few days later I realised it was the same surname and the same medical profile ! So I asked his secretary whether he was the same doctor and she confirmed he was.

    Keeping in kind I struggle with what and how to eat and who to trust I hope very much I will feel more convinced about whatever I am doing after dealing with him - and of course I can share info on here and likely I could ask questions if you have any.

  • snooky1954
    snooky1954 Member Posts: 850
    edited November 2019
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    Anotherone, Congratulations that is good news. Now you can be guided by someone who you know is trustworthy. Very happy for you.

  • anotherone
    anotherone Member Posts: 546
    edited November 2019
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    I will be really suck if he as well tells me to go vegan ShockedHappy

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2019
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    image

    Hi All...well here we are :) It was a nice ball and I am grateful to have been able to attend another Birthday Ball with the love of my life.. I guess I will cross post since not everyone comes here ....