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Metformin-Anyone on this trial?

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Comments

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    I have to work hard to stay objective about the possibility of using metformin for cancer, but I do very much want it to prove itself one way or the other.

    What is so encouraging about this one to me is that thus far it may work for both ER+ and ER- and it may work for triple negs; and in addition, it is inexpensive enough that it is something that would help breast cancer patients throughout the world and not just in developed countries. If it does work, it also could provide additional help in improving one's general physical status, particularly for the elderly, in terms of weight management for those who are not diabetic but overweight.

    I'm so glad that trials are being done, and only wish I wasn't so far out from treatment to join in to help provide the answers.

    A.A. 

  • lollypop59
    lollypop59 Member Posts: 7
    edited January 2012

    i have been ready on here that metformin isgood for breast cancer , well i have been taking metformin since dx with diabetes, in sept 2010.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited January 2012

    Hi all, I thought I would chime in as I went through all the prep for the study in Indianapolis. First, they will look at your stats. If you meet the basic requirements, which are



    If the tumor is less than a cm, it has to be in your nodes

    If it is bigger than a cm, it doesn't have to be.



    Then they bring you in and you complete the folowing.



    You have to start the study within one year of diagnosis.

    It is ok to still be on herceptin and tamoxifen

    They will bring you in, you fill out a survey about lifestyle, eating habits, etc.

    Then you have blood work and a lung -xray.

    Then they will give you a giant jar of pills.



    In my case, they didn't realize until I had everything done and the pills in my hot little hand, that one part of my tumor was .8 cm, which kicked me out.



    In talking with my pcp about it, I gave hiim the study. He said that metformin is so cheap, he could prescribe it for me, and I could fill it and not run it through my insurance. I filled the first script at Walmart for $4, and just learned I can get it free at our local Marsh as part of their diabeteic program. I am going to check into that tomorrow.



    So I am conducting my own personal study. Dr. Miller at the IU Med Center was very positive about it.

  • starella
    starella Member Posts: 101
    edited January 2012
  • 1skifreak
    1skifreak Member Posts: 1
    edited January 2012

    Hi, I am new to this post.  I go in Friday for the lab work.  Then, if all looks good I will get my large jar of pills the following week.  This study is  a Phase III randomized trial (double blind study) of Metformin Vs Placebo.  It is an international study with people from Canada, US, Britian, France and not sure where else.  My understanding is that this is the final phase of the study (well at the end of the 5 years or so and when data is compiled) but I could be wrong.  I have a friend that is a PharmD.  We talked at great length about this before I decided to join.  Wondering if I will get the real deal or not.

  • Ralsper
    Ralsper Member Posts: 131
    edited January 2012

    I got my Metforming/Placebo 20 days ago. Good luck!

  • starella
    starella Member Posts: 101
    edited January 2012

    Hi, Ive had alot of gi issues with metformin...i think this side effect is very common.

  • herta
    herta Member Posts: 5
    edited January 2012

    Hi all. I started on metformin/placebo trail on Jan 19th. A little nausea after I took my third tablet with lunch, less than 24 hrs after taking the previous tablets with my evening meals. In order to participate in the trial, I'm giving up jaio-gu-lan tea (aka immortality tea) because it can affect insulin pathways:  http://www.ehow.com/about_6468881_jiaogulan-insulin-receptors.html 

  • Wendyspet
    Wendyspet Member Posts: 103
    edited February 2012

    Hey ladies--I am considering joining this trial.  Questions for you:

    1. Would your recommend, is it do-able in terms of time requirements and side effects?

    2. Does your insurance company care at all?

    ...and anything else you would like to mention.  Thanks!

  • youngmama
    youngmama Member Posts: 10
    edited February 2012

    I started Metformin about a week ago.  I think I got the placebo.  No side effects at all and the pills don't taste anything.  Do yours have a bitter taste?

  • kks_rd
    kks_rd Member Posts: 99
    edited February 2012

    Hi Wendyspet, I would definitely recommend from a time point of view.  Initial commitment is about 1-2 hours and all the follow-ups are intended to coincide with your regular follow-ups.  SEs were quite do-able for me, so much so that I think I might be in the placebo group.

    Not sure what insurance says about it.  I'm not sure if they even know!  The pills were supplied by the hospital pharmacy.

    Compared with everything we've been through, BC-wise, this is easy in my opinion.

  • Ossa
    Ossa Member Posts: 685
    edited February 2012

    I started the metformin study in late Dec. Still got 6 Herception treatments left as well as started Tamoxifen med Dec.

    Pretty sure I am getting Metformin as my DH is type 2 diabetic and is on Metformin.. He tasted one of my pills and said it tasted just like his.. Plus I has more frequent bathroom trips as well as a lot "gassier" for a few days

  • Ralsper
    Ralsper Member Posts: 131
    edited February 2012

    I took mine once without food and I got so sick (nausea, etc), other than that I haven't noticed anything different. Taste???? I have not tasted mine. What is the difference in taste between the placebo and the meformin?

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited February 2012

    Even if they didnt give you the pills, metformin is so cheap there is no reason to run it through your insurance. Walmart as it dor $4, and a local grocery store gives it away where I live, as part of their diabetic program.

  • herta
    herta Member Posts: 5
    edited February 2012

    If you don't like the side effects, you can drop out of the study at any time. My thought was join while I'm eligbile. I'm committed to trying it out, that's all. I haven't ramped up to the full dose yet but if the side effects are nasty (or if I really think I'm on the placebo), I will drop out and go back to drinking jiao-gu-lan tea which also affects insulin pathways. 

  • kks_rd
    kks_rd Member Posts: 99
    edited February 2012
    Bump. Cool
  • kks_rd
    kks_rd Member Posts: 99
    edited February 2012
    Bump. Cool
  • fluffqueen01
    fluffqueen01 Member Posts: 1,801
    edited February 2012

    My only side effects were the intestinal issues, and in my case, it turned out to be a blessing. I was having problems with fissures left over from my chemo/surgery/pain med months. I could not get everything healed up. The intestinal issues kept everything "going easily", lol, so all the other problems healed up.

  • navymom
    navymom Member Posts: 842
    edited February 2012

    Thanks to everyone for posting such great information regarding metformin.  And thanks to all who are participating in research studies.

    I decided to call my Onc today and ask her opinion about Metformin and if she would be willing to prescribe it.  Her nurse(I think...could have been a tech) retruned my call.  The answer was NO.  Onc will not prescribe until the Universities are finished with studies and results are available.  I am not satisfied until I speak with the Onc myself.  My 6 mo f/u appt is not until the last week of April.   BUT I have an ace in my pocket......I have an appointment with my cardiologist in March.  He manages my Blood pressure meds.  He also did some blood work back in December to check for diabetes.  My Hgb A1c was 6.0.  (normal is 4.2 to 5.8)  So I will go armed with printed info on Metformin and ask him to precribe it.  If that doesn't work I will see my ob/gyne in May.  He has taken care of me for the past 11 years and has seen my through other serious issues in addition to BC.  He is great listener and repects and listens to what I have to say. 

  • riley08
    riley08 Member Posts: 5
    edited February 2012

    Thanks for all this wonderful information. I was asked to join the study, however after reading all the posts of people taking it who are not in the study, I decided to ask my Internist if he would prescribe it for me as my Oncologist say NO. I wanted to make sure I was getting the real thing and not a placebo. After reading all the positive results of Metformin my internist agreed and gave me a script for it. I had wanted to know if the gals who are taking it on their own and not through their Oncologist are telling their Oncologist that they are taking it.  I am not sure mine is going to be happy with my decision.  Thanks for your help.

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited February 2012

    Good for you NavyMom. I like the fact that you are being in charge of your decision. Doesn't mean it will be our cure drug, but if it is effective and safe I don't see why not.

    I have completed my first six months other than GI issues everything is going okay. I truly hope it offers some benefit for TNegs since we have no form of follow-up care beside regular check-ups.

  • riley08
    riley08 Member Posts: 5
    edited February 2012

    This is my first post but I have been reading all the responses regarding the drug Metformin with interest. My GP also prescribed Metformin for me after my Oncologist said no. Is anyone telling their Oncologist that they are taking Metformin if is wasn't prescribed by them?

  • Ossa
    Ossa Member Posts: 685
    edited February 2012

    riley

    I would tell my oncologist. It is important they know all your meds..

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited February 2012

    I would want the onc to provide me with very specific supporting information documenting why he refuses.

  • riley08
    riley08 Member Posts: 5
    edited February 2012

    Thank you Ossa, I am going to give her a call and let her know that I am starting the drug.  I am not sure how she is going react through.

    AlaskaAngle  Excellent idea. The only reason she gave was that drug is still in the clinical stages and the final results aren't known yet.  When I brought all my supporting documents to my GP (same ones I brought to the Oncologist) he took the time to read them and do his own study, and determined Metfomin appeared very promising and gave me a prescription.

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited February 2012

    Well I was told I am not eligible for the study becuse I am triple negative and have had chemo and am NEd right now....well isn't that the point...and my onc won't prescribe becuase "There is no evidnece as yet that this is effective" so I am going ot my PCP. I have printed out soem things but if anyone has a link to an article that you think really spells it out, please post or PM me as I am overweight and maybe this drug would help in 2 ways.....rather annoyed. The only study I was eligible for was a phone support one and then I said yes and they screened me out as too "active" a lifestyle....what does that mean..I do yoga twice a week and walk 2 to 3 tiems a week...no athlete here.

    My gosh...frustrating!!!!!!!

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited February 2012

    paintingmywayout,

    There are a number of different trials for this that were started, beginning in 2009, in case one of them fits you better? 16 came up when I used metformin and breast for search words on clinicaltrials.gov:

    http://clinicaltrials.gov/ct2/results?term=metformin+breast

    I am 10 years out and triple pos but I am not sure what that connection has to do with it.... I do know that using a very very low dose off-label has made a real difference in my life. It hasn't brought about weight loss but I was down to the torture of counting every grape I ate and still gaining weight, before I started the metformin. I still have to limit my diet more than most people ever do, but at least now it is less of a nightmare for me.

    A.A.

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited February 2012

    Thanks Alaskaangel many of htese are from Canada and the UK...I was trying for a  U.S. study but if I get no hwere I will go to the link on the first page where people are buying it ...tired of others controlling our destiny! But I know this is only a possibility based on retrospectively looking back at diabetics and the percentage that got breast cancer. I did get a call back today from 2 places but both said because I am triple negative they are not accepting me....

    Thank you again. I appeciate your thoughtfulness.

  • kks_rd
    kks_rd Member Posts: 99
    edited March 2012

    Susan, I'm confused. I'm triple negative and was accepted into the US study without any trouble. This is the one: http://www.cancer.gov/clinicaltrials/featured/trials/CAN-NCIC-MA32 

    Hope this helps. Good luck!