Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Metformin-Anyone on this trial?

2456726

Comments

  • geewhiz
    geewhiz Member Posts: 671
    edited July 2011

    I wholeheartedly agree. My family doc now prescribes it to other cancer patients after my research pointed her in the right direction. Knowledge is power ladies!! I now take 2 500 mg tabs of metformin daily, one in the morning and one at night. I am not overweight. I have felt no side effects from it and have been on it about 7 months.



    I had heard about proponalol, or however you spell it...but never followed up on it. Thanks for taking the time to mention it!

  • EmilyInOntario
    EmilyInOntario Member Posts: 288
    edited July 2011

    My oncologist is setting me up for the metformin trial. However, I am thinking now that I don't want to be the one getting the placebo. My rationale is that if they are doing so many clinical trials with metformin now there has to be some evidence that it can have beneficial effects. Will continue to follow all of your comments. Is anyone else here in Ontario and already participating in this trial?

  • taniak
    taniak Member Posts: 4
    edited July 2011

    My oncologist at Stanford had wanted me to do the clinical trial but there had been some snags getting this Canada-based trial open in the US and she agreed to write the presecription off label.  Metformin is showing particular promise for triple negative lines, and may actually enhance the effectiveness of chemo (with the notable exception of platinum based drugs, which it might diminish).

    I am still not quite sure if metformin lowers glucose levels in those with normal levels or if the mechanism is something else.  The study calls for 850 mg/day for the first four weeks, then to 1700 mg/day thereafter for 5 years. This is an overview of the trial:

    http://mbccopnetwork.org/wp-content/uploads/files/protocols/NCIC_MA-32_01_Schema_Eligibility.pdf

    My oncologist will also have me see and endocrinologist so that we can be measuring all the right things (liver, kidney, glucose, etc.) so that I am being monitored appropriately.  If someone at a huge institution like Stanford is willing to do this, other doctors who are up the most current research and hypotheses should have no issue. Of all the more cutting edge ideas I have found, this one by far has the greatest potential benefit and lowest risk, which is why I think my doctor is willing to do this. I wouldn't want to take this without a doctor's oversight and monitoring, though...

    http://forum.tnbcfoundation.org/using-metformin_topic7990.html?KW=metformin 

    another forum with alot of good posts and links to research.

  • EmilyInOntario
    EmilyInOntario Member Posts: 288
    edited August 2011

    Follow-up:

    I just got word that I am not eligible for the metformin trial. Although the oncologist is confident I do not have bone mets ( MRI's are suspect but bone biopsy was negative) they have decided not to include me. I had mixed feelings about participating anyway as I would not have known whether I was getting the pacebo or not. 

  • heathermcd
    heathermcd Member Posts: 21
    edited August 2011

    so, i'm going to be trying to get on the Neratinib trial starting in October. I was offered the Metformin trial but since I can get it in other ways I decided to do the Neratinib. Do you know if taking Metformin on the side could disqualify me from the Neratinib trial?

    I'm going to talk to my onc about a prescription for Metformin and hope he conceedes. If not, i'm thinking I might order it online from India. I'll do anything to lower my risk. I so badly just want to live.

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited September 2011

    hi I am taking 1000- the pcp said I could go to 1500 but I am not sure. I see one study for 1700- what is everybody else doing?

    thanks

    CR

  • geewhiz
    geewhiz Member Posts: 671
    edited September 2011

    Heather, my doc has me on metformin 1000mg and I am in the neratinib trial...and got the real drug. I am in my 3 rd month of the trial and everything seems fine so far. The diahrea was horrible at first, but settled down.

    I have low blood sugar, so I take the metformin with a little something to eat. Otherwise I get a little dizzy sometimes.

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited September 2011

    Thanks for responding GeeWhiz-

    Hope you don't mind me asking.

    how do you know that you are "on the real thing"?

    are you encouraged by the drug?

    what kind of follow up do you get?

    do you take any other RX's for BC?

    thanks 

    CR

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited September 2011

    Good Morning ladies:

    I have been monitoring this post for awhile. Yes, I am stalking you all. I am on the Metformin trial as well.

    Chocolaterocks: How I knew I was getting the real thing?? You will have more #2 movements. Weight loss is another but it's too soon for me to report on that. I just started 2 weeks ago.

    Also in the beginning you have an X-ray and other bloodwork; which is a good thing to me. Nothing like knowing your numbers. I was pleased to learn that my Vit-D level was 77, a big jump from 17. I asked for this; since they needed bloodwork for the study. I want something out of the deal too.

    The trial is for 5 years and every six months your numbers are re-done followed by an x-ray. Hey I am all for being followed and not having to pay a co-pay. I pay enough bills already.

    Please other ladies give your experience

  • mags20487
    mags20487 Member Posts: 1,092
    edited September 2011

    there is also a discussion about metformin on the tnbcfoundation.org website.  Anyone with TN can sign up for that discussion board as well.  Gonna ask my onc about it on Monday. Will print off the info and take to her.  I am set to start my chemo soon.

    Maggie

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited September 2011

    Thanks Mags20487 I'm a member but don't post often. Too surreal for me.

  • thePuppetLady
    thePuppetLady Member Posts: 21
    edited September 2011

    just signed up for the study today :)

  • Tjkowal
    Tjkowal Member Posts: 2
    edited September 2011

    I also signed up today. have early stage tnc breast cancer. It just kills me though that I am chancing taking a placebo for the next 5 years when I want to do everything possible to avoid recurrence. Can you find out in any way if the drug is a placebo--drug analysis, blood samples, etc?

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited September 2011

    HI TJ

    I am taking metformin (1000) so I go to my primary for a renewal of my RX, and they ask me when I ate last ( I had a snack an hour ago- ofcourse chocolate), and decide to measure the sugar in my blood. It was the same little machine (finger prick) that people with diabetes use. It was 180 and they said that was good.  I would like to know more as well - will this drug be successful. I don't know if this helps but I thought I would share.

    take care and thanks

    also if others have information  please share.

    thanks

    CR

  • DebRox
    DebRox Member Posts: 141
    edited September 2011

    I am currently on 1000 mg of metformin per day for pre diabetes.



    How you can tell if you are on metformin or the placebo is to take an extra pill.



    How do I know this? One day I couldn't remember if I took my morning pill, I normally take one in the morning and one at night. I took another pill at lunch. The next day I had major gi problems, tmi, but had to get to a bathroom incredibly fast at the mall as in run! Very watery runny loose stools.



    Hope this helps. :)

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited September 2011

    DebRox,

    hate to support such a theory but I believe that happened to me as well.  Incredible gastric pains and running to  the ladies room while in the large supermarket.

    CR  

  • Tjkowal
    Tjkowal Member Posts: 2
    edited September 2011

    One other question for those in the trial. The real drug is supposed to have a pronounced fishy smell. It has been described as like the smell of a locker room or the inside of an inner tube. Did anyone experience this? Tj

  • geewhiz
    geewhiz Member Posts: 671
    edited September 2011

    I have the real drug, and don't smell anything weird.

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited September 2011

    DebRox- then you are ON IT! LOL I had the same situation I was in Target when it started. I abandoned my cart and rolled out.

    Another is weight loss. I am so waiting on this, but I think that will come after you have been on it for awhile.

  • outfield
    outfield Member Posts: 235
    edited September 2011

    I am on it, the real thing.  Just missed getting into the Canadian trial by my dates of treatment but got someone to agree to prescribe it for me and I will follow the trial for any interim results.  I've had some experience with it before.  Mine and what I've seen before smell awful and fishy, but not terribly strongly.  Wouldn't notice an open bottle from a few feet away.  

    I didn't have bad diarrhea, but I farted so much the first night it kept me awake.  

    I wanted to badly to be part of the trial.  I have not been invovled in any research yet and that bugs me.  I just haven't been eligible for anything going on out in the boonies where I live.  I am so conscious that there was someone, however many years ago, who was the first person to undergo any of the treatments I've had.  Can you imagine being the first person to take Adriamycin?  Or Taxol?  Or to let yourself be irradiated? 

  • sweetbean
    sweetbean Member Posts: 433
    edited September 2011

    I e-mailed my onc about this.  If she doesn't get back to me, I am going to talk to my integrative doctor.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,795
    edited September 2011

    When I was interviewing oncologists, I went to the IU Med Center. She told me about the trial and that they were part of it and just waiting for the medicine. she added my name to the list. I did not end up using her (although I loved her), mainly because another oncologist that I really like had the same protocol and was a lot closer and easier to park, etc. And his office is right next door to my plastic surgeon.  I chose convenience.

    I just got a call, however, asking me if I want to participate in the trial. I think I am going to do it, as neither my oncologist nor the one at the med center believe in doing a lot of follow-up tests for early stage breast cancer. This will get me some tests, even if I have the placebo. My sugars are usually in the 90's when tested before herceptin, but I always have an appointment around 10 and usually haven't eaten anything.

    I am glad to have found this discussion board as it has helped to solidify my decision.

  • kmpod
    kmpod Member Posts: 84
    edited September 2011

    I'm in the process of signing up for the study. I have appointments for the xray and blood work coming up soon. My MO, Dr. Richard Tozer at the Juravinski Cancer Centre in Hamilton Ontario, is one of the lead investigators for the trial.

    Before I signed up I had my GP run blood work to see if I came at all close to qualifying as pre-diabetic so I could be 100% sure of getting the metformin. I didn't, so decided to join the trial. Like fluffqueen above, I figured that I'd have the benefit of closer follow-up than is usual here in Ontario even if I got the placebo.

    I also really like the idea that I could be contributing to the well-being of others who will wrestle with this beast in the future. 

  • DebRox
    DebRox Member Posts: 141
    edited September 2011

    Fighter_34:  I know I am on it.  I am not a part of a clinical trial.  I had my GP write me up a prescription back when I was first dxd with BC.  During my wellness exam we discovered that I am pre-diabetic and it is not controlled with diet or exercise. 

    It was then I started researching bc and IGF relationship and I am very happy to be taking this med.  There are so many studies coming out of Canada regarding metformin, I hope it proves to be a solution to preventing recurrence!

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited November 2011

    Anyone experiencing weight loss yet??? Or any other side effects other than stomach issues....curious

  • husband11
    husband11 Member Posts: 1,287
    edited November 2011

    My wife ended up getting a prescription for metformin from her personal physician.  Prior to that, we were buying it from a mail order source.

  • momoschki
    momoschki Member Posts: 218
    edited November 2011

    My integrative onc Rx'ed metformin for me-- 500 mg, 2x a day.  I am not diabetic either, but he is a firm believer in its preventive power.  And yes, I have lost weight (but who knows if it is from the drug or all the anxiety that went along with this breast mess, surgeries, etc.?)  Down about 5 lbs since last March.  No fishy odor that I can discern and no GI problems for me.

  • Babs37
    Babs37 Member Posts: 320
    edited November 2011

    I'm taking Metformin,850mg X2 since April and beside GI problems that never really subsided, I feel that I can't smell certain things like before and taste less too. 2 weeks ago I had to stop taking my metformin for 3 days because of scan with contrast and my sense of smell and taste came back and my GI problems went away. Felt so great to feel "normal" for a change. All the SE came back when the I started taking the pills again Frown. Probably had some weight loss too but could be because of excercises.  

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited November 2011

    not on trial but taking the rx- 1000mg a day since August. No problems as long as I eat regularly.  Weight is up 1lb- need to keep exercising. No tami either so I hope (prey) it works! INTERESTING that Babs 37 is taking such a bigger dose - my primary said I could take more but I figure that since I am doing okay and this can be a typical dose- hopefully its enough?

    I am hoping to hear that this drug is really working in the fight against re-occurance.

    take care 

    chocolate rocks

  • cheryl1946
    cheryl1946 Member Posts: 62
    edited November 2011

    I am a type 2 diabetic and I've taken metformin for many years. 1000 mg 2x a day.

    I get diarrhea from it;to prevent that,I eat 2 bananas daily.

    I never lost weight since starting the med. Maybe if you are not diabetic you lose weight.