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Metformin-Anyone on this trial?

My onc suggested I go on this trial after I finish chemo.  Is anyone else on this trial?

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Comments

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2011

    Not in the trial, but taking metformin because of the amazing study results. I have been on it several months. It's only $4 a month. It's one of the few things that seems to go after stem cells.

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

    geewhiz, did you manage to get a presciption for metformin?  How?

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2011

    Yes I did. I showed my doc the studies and got it. We started with 500 mg and worked up to 1000 mg in divided doses. I dont feel a thing. I can come up with a quick case of diabetic tendencies if need be. I guess that's off label use? But frankly I don't care. I had a super aggressive pathology and bending the rules doesn't phase me when I look at my 3 young children. I have had no issues, and it sure looked promising. The drug has been around so long it's considered an orphan drug. My doc mentioned that not many people want to pour alot of money into an orphan drug. So I hope these studies keep moving forward. I have done lots of research into the stem cell topic. I am very comfortable with what I am doing, even though I am primarily a naturalist. But, No ratting me out!!!!

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

    geewhiz, I respect what you are doing.  Its a drug with a well known history of risks from its long use in type II diabetes.  I wish I could get a presciption for my wife.  We asked the oncologist and he said there was no evidence to support prescribing it.  I think this is the wrong attitude, given the low risk it poses.  As for no evidence, I think more correctly what he means is that there is no clinical trial evidence in breast cancer patients, yet.  At the same time, there is evidence that supports conducting such a trial, which is being done.  Bev was too far out from diagnosis to be eligible for the trial.  We checked into it.

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2011

    Timothy, my general practioner gave me the prescription. It would probably make my oncologists head spin around. I also work with a naturopath who has an md, and he told me he'd have no trouble writing one for me either. He also told me to look into studies about low dose naltrexone. I did a little, but need to follow that back up. So, perhaps taking a run at another doctor might yield better results?

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

    Trying another Doctor, such as her personal physician is a good idea. 

  • weety
    weety Member Posts: 378
    edited February 2011

    I stumbled across your discussion about metformin.  I've been wondering for a few months now if I should raid my husband's stash of metformin (he's diabetic) and I've been doing some research to help me decide.  geewhiz, you said, "bending the rules doesn't phase me when I look at my 3 young children."  I'm so glad you said that, because it's what I have been thinking, too.  What do you all think?  Should I raid my husband's stash? 

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2011

    Hi Weety, the studies sure look promising. It makes sense to me. I am constantly dumpster diving through pubmed. It would be great if these researchers would all sit down at a table together occasionally. The most promising stuff IMO involves the inflammatory factor and insulin response. There is a lot of talk about proteins with vaccine therapy etc....but when you break down the pathways these proteins work on, it often ties back to inflammation. Thats why baby aspirin seems to work, and tumeric etc. I feel confident that metformin has been in use so long that it's safe for me to add to my personal regimen. I read your profile. I am 44, former college athlete, thin and primarily vegetarian all my life. Never smoked, drank only a little socially and never touched drugs. I have nothing else noteworthy in my health history and breast fed all 3 kids until they were about 18 mos!! It's all maddening, isn't it?

  • weety
    weety Member Posts: 378
    edited February 2011

    Thanks so much for the reply, geewhiz.  Yeah, this whole thing is maddening--you're right.  Thanks for the vote of confidence on the metformin--do you think it is too late to start it since I was diagnosed July 2009?

  • bikenyc
    bikenyc Member Posts: 57
    edited February 2011

    I saw a doctor at a very reputable alternative center in NY who suggested this is something I might want to add to my chemo (starting in 2 weeks).  They suggested I bring it up with my onc...I did and was pretty quickly shut down, given the rationale that I shouldn't be trying anything that isn't proven. I have been able to obtain a script (through my GP) and will bring it up again with my onc, but am fairly confident he will protest. 

     I've done quite a bit of reading about this and haven't found anything that suggests it could hurt chemo's effectiveness (but could quite possibly help it).  Anyone read anything to the contrary? 

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2011

    The drug has been in use for SO long. It's not likely that anyone will pop up with surprise side effects. I can't see how it would interfere with chemo. They work on entirely different processes in the body. The chemo is going after highly proliferative cells and metformin is regulating insulin levels. And Weety, I just started using this over the summer. I think the studies referencing the breast cancer stem cells was done last year. I like to think that metformin mops up anything that chemo, herceptin and rads didn't ...especially since they don't work so great on stem cells, which are basically seeds for recurrence. No further planting in these fields, thank you very much!!!!

  • weety
    weety Member Posts: 378
    edited February 2011
    Hee, hee.  . .  I like your analogy geewhiz!  Thanks again for your much researched input!   My husband's pill bottle was accidentally spilled and several pills were lost down the drain last night, if you know what I meanWink  The only thing that I'm wondering is if it is okay to cut them in half (they are 1000mg pills).
  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 74
    edited February 2011

    Some women in my other group get it here without a prescription.

    http://www.antiaging-systems.com/PRG-139/metformin-metforal.htm

  • lrr4993
    lrr4993 Member Posts: 504
    edited February 2011

    Can someone link the studies if you have them handy?  I have heard bits and pieces about metformin and cancer, but do not know the details.  I would like to hear more.

    thanks! 

  • Gitane
    Gitane Member Posts: 58
    edited February 2011

    I asked my oncologist about metformin.  He said it could do no harm and may be helpful.  I am now taking 1000mg daily.

  • weety
    weety Member Posts: 378
    edited February 2011

    Gitane, where in CA are you located? 

  • janet in virginia
    janet in virginia Member Posts: 923
    edited February 2011

    fyi - Here is a link to the meformin clinical trial.

    http://clinicaltrials.gov/ct2/show/NCT01101438

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

    Does anyone know the dosage being used in the clinical trial?

    Gitane, or anyone else on metformin, are you experiencing any side effects?

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2011

    Timothy...the dosage I heard in one of the trials was 1000. They recommend a start you on 500 mg, then work to divided doses. I have not noticed any side effects. They strongly discourage drinking alcohol, because of the insulin reaction. I have very low blood pressure, and I work out a lot. I have noticed I see stars a little easier than normal, so I make sure to eat well before exertion. It also curbs appetite a bit...so I don't feel hungry so I have to remember to eat!

  • Gitane
    Gitane Member Posts: 58
    edited March 2011

    I'm in Southern California, like you, weety.

  • heidihill
    heidihill Member Posts: 1,858
    edited March 2011

    Along with metformin, chlorquinone and N-acetylcysteine seem to have anti-tumor properties. Anyone taking the latter two?

  • geewhiz
    geewhiz Member Posts: 671
    edited March 2011

    Chlorquinone is in some malaria vaccines....I have read about folks getting the vaccine not for travel, but just for the immune related activity this seems to boost. Its in studies to see if it shuts down the ability of cells to autophage...self-eat. The bc cells can morph themselves to lay low for several years...doing what they need to do to survive hormonal therapy. Then once the therapy is stopped, progression may occur. From what I remember it works by changing the acidity of the environment of the cell. If you read about the chemical itself, it is mentioned that the exact mechanism of action is not known, but its thought to be acting on DNA. Being hormone positive, and on tamoxifen....I will keep my eyes on this for sure!! Thanks for bringing it to the forefront again for me.

  • Latte
    Latte Member Posts: 141
    edited March 2011

    danielaes mentioned in the June 2010 chemo thread that she is on the metformin trial. you could PM her for info

  • Gitane
    Gitane Member Posts: 58
    edited March 2011

    Timothy,  I had the usual side effects described in the literature about this drug.  For me it is tummy gas, and dreams that seem easier for me to remember than normal.  (I don't know how else to describe it.)  I read that it can cause low blood sugar, which affects the brain, so maybe that's it.  I'm not diabetic, and don't watch the carbs.  I'm not sure how this all relates.

     geewhiz,  Really interesting information.

    Latte,  I'll see if I can find danielaes.  Thank you. 

  • Octobergirl
    Octobergirl Member Posts: 18
    edited March 2011

    Geewhiz,  Can you share the studies you cited to convince your doc to prescribe metformin? It would be great if you have links.  I asked my onc (through the NP unfortunately) about Metformin in early 2009. He apparently knew nothing of the research and refused to prescribe it. I will be seeing him in late March and would like to bring this up again and am ready to look elsewhere for the script if he refuses again. 

    Has anyone here had side effects from taking Metformin? Do any of you have low body weight? Have prescribing docs mentioned any issue with taking Metformin with low body weight?

    Matty Groves, do you know where the website that you shared originates from?  I found a reference to Panama, SA but the location is unclear.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 74
    edited March 2011

    The site originates in the Channel Islands in the UK.

  • n0b0dyz
    n0b0dyz Member Posts: 1
    edited June 2011

    Today my oncologist asked if I'd like to participate in this study. Enroling in this double blind trial would give me a 50% chance of doubling my odds of being cancer-free after 5 years.

    Perhaps I should be selfish and get metformin from my family doctor - a 100% chance of doubling my odds.

    Or maybe I should join the study, on the basis that I'm going to be a statistic someday, so I might as well be a useful one.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 74
    edited June 2011

    There is already so much known about Metformin's cancer benefits that they are just doing this double blind trial to confirm what they already know. The placebo group will be victims.

    I would never enter a clinical trail for a something that is already known. You would be increasing your risk factors if you get in the placebo group. These trials often attract poor women who cannot afford the drugs or don't know exactly what a clinical trial is. If you've ever read an a actual clinical trial consent form you'll see.

    Also: the doctors often get a finder's fee for getting patients into trials.

  • pupfoster1
    pupfoster1 Member Posts: 176
    edited July 2011

    Wow!  I just found this thread.  I'm going to have to look into this further...........

    Sharon

  • skmarm
    skmarm Member Posts: 2
    edited July 2011

    I just wanted to weigh in on this...because of this discussion, I looked into the research on Metformin and took it to my oncologist as well.  As is the case with many of your oncologists, my oncologist didn't want to deal with it.  I went to my family doctor instead and he was open to the Metformin, taking a baby aspirin daily, monitoring my vitamin D levels (he takes Vitamin D as well) and even wrote me a script for Inderal.  I don't have high blood pressure, but found studies that demonstrate that propanalol has a beneficial effect on breast cancer recurrence.  Note that not all medications for blood pressure have this same benefit - it must be propanalol.  It is a beta blocker and seems to have the same deterring effects as metformin.  So I am on all of these, I have not had any side effects and I finally feel like I am doing something truly proactive to positively affect my risk of recurrence - that may be the best medicine of all, just having the feeling that I have taken some of my future into my own hands rather than waiting around to have a recurrence.

     What I genuinely was pleased with about Metformin was seeing that it not only affected breast cancer by lowering the circulating insulin in my blood, but it actually had a mechanical effect on the down regulation of the cancer cell itself - not exactly as strong as chemotherapy, but Metformin is more than a systems drug, it does cripple the breast cancer cell itself.  While I am not diabetic, I have always been overweight in the past (eating very few calories, no one could understand), I had issues with menstrual cycles that may have been related to weight and I developed gestational diabetes with both of my pregnancies (even though I was only 10 or 20 pounds overweight at the time).  Seems that me and insulin have never gotten along.

     Given that insulin affects cell proliferation and HER2+ breast cancer is a product of abnormal cell proliferation, tying Metformin (or insulin resistance) to this type of breast cancer just isn't a stretch in my mind.  

    My family practitioner also prescribed Adderall for me when I could not shake the fatigue of chemo and radiation six months after I ended both (I took a small daily dose of Adderall for 3 months and that kick started my metabolism and got me past that awful chemo fatigue).  He also prescribed Xyzal, which stopped my overwhelming itching (a response to Taxol) after my onc and an allergist tried everything.  I was itching constantly for 3 months and it took a family practitioner to prescribe a pill that I took once a day and I had relief overnight!!!  

     All in all, my family practitioner has done more to positively affect my quality of life throughout this thing than my oncologist.  I respect my oncologist and he gave me lots of meds to support me through chemo, but I don't give him total authority over my body.  If you want to try these medications (Metformin and Inderal), do your research, listen to your heart and you will find a physician who is ready to take the risk with you.  After all, the risks associated with these meds is far less than the risk your onc took when he dripped poison in your veins...at least, that is how I view it.  Good luck!