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Metformin-Anyone on this trial?

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  • LindaLou53
    LindaLou53 Member Posts: 60
    edited August 2012
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    Well, I just took my first 850mg Metformin tablet this morning with breakfast, so I am officially starting the trial protocol without actually being in the trial.  I waited a couple of weeks after getting the Ok from my onc so I could get a blood glucose meter and do some baseline testing prior to starting the Metformin.  I know that typically, blood glucose is not affected in non-diabetic persons taking Metformin, but I also know I would feel better having that baseline information before starting on the drug.  My baseline fasting BS runs 87 and my post meal BS has been running 108 on average the last 2 weeks.

    So we will see how it goes.  If all is well one month from now I will increase the dosage to the 850mg 2x/day.  I'm just very glad to be taking this step, since I feel the potential positive impact far outweighs the potential negative! Smile

  • WaveWhisperer
    WaveWhisperer Member Posts: 557
    edited August 2012
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    Hi, all,

     Started the Metformin trial in July and have had no side effects. Don't know whether that means I have the placebo, or I'm just fortunate. I'm set to start two pills a day this week, so we'll see what happens then. The clinical trial coordinator told me at least one woman in our local group could not tolerate the two-a-day.

     

  • oaktownmom
    oaktownmom Member Posts: 37
    edited August 2012
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    Thought I'd post my experience in case it's helpful to someone else who might be experiencing similar issues.  I first started the trial in May with no side effects.  But when I went to the full dose in June, I experienced really bad dizzy spells.  I went back to the half dose with no relief, and then stopped the pills altogether.  It took about 6 weeks for the dizziness to go away.  Have since restarted the trial, and went back on the full dose a couple of weeks ago.  Had a few days of dizzy spells when I started the double dose again, but has been smooth sailing since then.  My doctor suspects the dizziness was related to the trial drug since they couldn't find any other explanation and it coincided so exactly with the increase in dosage.    But who knows.  Just glad the scary dizziness is gone!

  • gwendolynann
    gwendolynann Member Posts: 11
    edited August 2012
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    I also started taking two "pills" daily.  One in the AM, on in the PM.  I'm pretty sure I have no SEs but the past two mornings my lower insides really hurt in the morning ?????? After using the bathroom the pain goes away, mostly.  It is kinda scary, but after having Cancer, everything is scary.  I have my Colonoscopy coming up next week .... happy about that!  LOL  Never thought I'd be happy about that!!!!!  Anyone else have this discomfort?  I have no lose stools though.  Thanks!

  • DianaNM
    DianaNM Member Posts: 62
    edited August 2012
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    I'm on a low dose of Metformin, trying to build up. Wondering if anyone else is experiencing more hunger? Did not expect this SE.

  • jillj
    jillj Member Posts: 18
    edited August 2012
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    Add me to the list of participants as of today Smile  I'm scheduled for exchange surgery on 9/5 so not scheduled to start taking the drug until after that.  Keeping fingers crossed I've got the real deal, but if I don't hopefully someone will benefit down the road by my participation anyway.
  • Msbelle
    Msbelle Member Posts: 160
    edited August 2012
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    Ok I'm a little disappointed. Went this week for all the labs and signing for the study with the research coordinator. Scheduled to pick up meds next week. Get a call today and I am now kicked out of the study. They determined my tumor was not big enough 1.3. They say it needs to be 1.5 or greater. I really wanted to do this. Now I have called my primary md to see if she will just prescribe the metformin for me. Not heard back yet. My paranoid mind is thinking there is another reason i was kicked out but they aren't telling me.

  • HLB
    HLB Member Posts: 740
    edited August 2012
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    I would just take it anyway. I plan to ask my onc for a script. Someone posted a link to a site where u can buy without a Script.

  • BellaJean
    BellaJean Member Posts: 32
    edited August 2012
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    I was told that the study is now only open to women with breast cancer that is at a high risk for reoccurance. So I'd be glad you don't qualify!  If you want the metformin, I think talking to your primary is the way to go!

    On a related topic: I qualify for the study as I am triple negative and have a high oncotype score. My oncotype score was done as I had some low ER positivity on my biopsy results.

    Here is my question: have any other triple negative women had their oncotype score done and if so what were they told about it. Have a great long weekend everyone. Cheers from Toronto.     

  • rn4babies
    rn4babies Member Posts: 72
    edited August 2012
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    Msbelle....I asked to participate in the trial and was told the same thing. My largest tumor size was also 1.3 cm.  I was told I had to be a Stage 1c and I am a 1b. I do have a high risk of reoccurance with a Grade 3 tumor and an Oncotype of 27. I was very disappointed and paranoid as well.  I see my PCP on Thursday and am going to ask her to prescribe it for me.
  • leggo
    leggo Member Posts: 379
    edited August 2012
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    If someone posted a site where you can buy it without a prescription, I'd be pretty leary. Even though it's a benign drug, it doesn't come without side effects. Kidney function has to be monitored. For instance, if you have a scan with contrast dye, you should not be taking it two days prior and not restart until normal kidney function has returned.

    Having said that, any doctor who is up on his research should have no problem prescribing it for any woman who has breast cancer....but I certainly wouldn't take it without his/her approval. That's nuts.

  • HLB
    HLB Member Posts: 740
    edited August 2012
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    Well my onc is pretty traditional as far as standard of care. and I don't qualify for a trial being stage 4, and I want the real thing not placebo. I read that smokers benefit the most from the reduction in cancer so I don't see a downside to me taking it all. if he doesnt agree I will just take it and add it to the list of what I'm taking so that he is aware. I have done my own thing before and he respects my decisions as long as I know all of the facts, which he gives me. Unless he has a convincing reason for me not to take it, but usually he will say "it's not approved for your stage" or something like that which is not good enough for me.

  • leggo
    leggo Member Posts: 379
    edited August 2012
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    My guess is your family doctor should have no problem writing a prescription if you provide him with the current research. It was actually recommended to me, by my doctor (I'm Stage IV as well). I didn't even know about this drug. Good that you're making him aware at least, if you're going to take it without a prescription. Where is this site that offers it without a prescription? I'm wondering if it's legit. The reason I ask, is that I've been through this before with another drug (where you didn't need a script) and once I got it, it was nothing more than baking soda. I hope this site for metformin without a script is reputable.

    DianaNM, normally there is a decrease in appetite, accompanied by digestive issues, but I do know another lady who has said she has an increase in appetite.

    MsBelle, don't worry about being kicked out of the trial for various reasons. They are so very strict with the parameters. The size being .2 smaller is reason enough for you not to qualify. It happened to another lady on here as well....I just don't have the ambition to read back to see who it was.

    ed: spelling

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited August 2012
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    Getting metformin without a prescription, if you even can do so, will be crazy expensive.  This drug costs $10 for a 3 month supply at WalMart and many other pharmacies.  It's even free with an RX at Publix.  I'd be wary of buying it from an internet dealer.  And yes, you should be monitored if you are on it.

    I had a CAT scan with contrast at Dana Farber last Friday.  I didn't have to go off metformin in advance of the test, but was advised to stay off it after the test until a blood test 48 hours after the test confirmed that my kidney function was OK.   All was good for me.  I take 1000 mg x 2 daily. 

  • HLB
    HLB Member Posts: 740
    edited August 2012
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    The link was in this thread somewhere. unless there is another metformin thread> i think it was $24.

  • [Deleted User]
    [Deleted User] Member Posts: 126
    edited September 2012
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    just started this trial and was told to take pill at night to lessen stomach upset.  this however has resulted in my not being sure if i have tell tale metformin stomach upset.  anyone else not feel stomach upset? VVH

  • rn4babies
    rn4babies Member Posts: 72
    edited September 2012
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    I just got a prescription from my PCP. She told me to take 250mg twice a day for about 4 weeks then increase to 500mg twice a day. Does this sould like the correct dosage that's being given in the trial?

  • Chocolaterocks
    Chocolaterocks Member Posts: 94
    edited September 2012
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    Hi- I am not on the trial and take 1000 a day - 500 at a time. I always take one just before I go to bed which is much easier on my stomach. I also the the first one with food in my stomach. Taking the rx on an empty stomach is really hard on the stomach and requires a restroom to be close....

    good luck

    CR

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited September 2012
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    The clinical trial dose is 850 mg twice a day.  They start you out lower and build up to that dosage.

    Your body gets used to it, and you may not have any problems at the lower doses. 

  • purple32
    purple32 Member Posts: 1,767
    edited September 2012
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    VVH

    I take it ( not on trial) and it bothered my stomach the first 4 weeks ----even with food/ bloated etc .

    If you REALLY want to tell, I might try it sometime during the day with very little food in the stomach.  Be near a bathroom !

    GOOD LUCK

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited September 2012
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    Purple-LOLOL I did this when I first started, but I didn't know any better I was in Target when it struck me. I left my cart and got out of there FAST! Glad I wasn't far from home.

  • purple32
    purple32 Member Posts: 1,767
    edited September 2012
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    hahahahah, fighter.

    Well, it IS a good way to tell  :>)

  • fluffqueen01
    fluffqueen01 Member Posts: 1,795
    edited September 2012
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    They must have changed the requirements. When I started, I was booted out because they said it either had to be in my nodes if it was under 1 cm, or not in my nodes and over 1 cm. I was 1x1x.8 cm. out I went, after having all the tests and being given the bottle. Had to return it. My pcp prescribed it though after reading the research. It is free at a local grocery store here.



  • jillj
    jillj Member Posts: 18
    edited September 2012
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    Question for those taking Metformin that were not already on it due to T2 diabetes...I am enrolled in the trial (not completely sure if I have the real thing or not but suspect I do).  I started taking the pill 1x/day the day after my exchange surgery and am not up to 2 pills yet.  Since surgery/began trial, I have been unusually tired.  Not tired like I was on chemo, but by the afternoon I am dragging ass!  I have a desk job (even work from home).  The exchange surgery was a piece of cake compared to the BMx--I had surgery on Wed and was back working on Monday.  I am trying to figure out if the Metformin may be causing the tiredness--anyone else have this issue???  It's not one of the potential side effects listed but I am having a hard time pinning down why I feel this way.  I was not feeling like this between the BMx surgery and exchange (I had chemo before BMx) so don't think it's remenants of chemo or BMx.  Any thoughts would be appreciated!  Thanks girls.

  • Ossa
    Ossa Member Posts: 685
    edited September 2012
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    jillj.. Interesting .. I am also very tired.. Had chemo before mx  never connected the tiredness to metformin hmm.. thought is was from att the crap we have been through this past year.. interesting thought

  • leggo
    leggo Member Posts: 379
    edited September 2012
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    jillj, I had the same problem. I was soooo tired and I assumed it was due to my liver, but after speaking to my family doctor about it, he mentioned that it takes a while to adjust (which is why they prescribe at smaller doses to work your way up). He takes it himself for prostate cancer and had the same fatigue, actually had to take afternoons off for a while. I've been taking it for a few months now and the fatigue has subsided, as well as the tummy issues. Hang in there, and hopefully, the tiredness will resolve itself for your as well.

  • lintrollerderby
    lintrollerderby Member Posts: 70
    edited September 2012
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    I had the fatigue also. I did some researching and the only thing I found (which makes sense) is that since Metformin lowers blood sugar levels in just about everyone, it can cause extreme fatigue. I'm not sure if it's accurate, but it makes sense to me.

  • jillj
    jillj Member Posts: 18
    edited September 2012
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    Well maybe I am getting the real pill! Smile

    So did you guys adjust the frequency that you eat in order to counteract drop in blood sugar to eliminate the fatigue or did your body adjust?  I'm an athlete so I need to get this figured out before I get back to training or I think I'm going to have even more problems. 

  • leggo
    leggo Member Posts: 379
    edited September 2012
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    My blood sugar (I'm not diabetic) has not dropped since taking the metformin so in my case, I don't think that was the cause of the fatigue. I didn't eat or do anything differently....just waited for it to pass. Perhaps it would have gone away sooner had I eaten smaller meals throughout the day? I don't know. No one ever suggested it to me. Hopefully someone will come along with some concrete answers. I hope you get it figured out soon.

  • lintrollerderby
    lintrollerderby Member Posts: 70
    edited September 2012
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    I have the flu right now and posted while laying sideways in my bed yesterday from my iPad. It didn't even occur to me when I posted yesterday about the low blood sugar that I'd read one other thing about Metformin and fatigue. I've also heard that it can deplete the B vitamins (I think B-12 in particular, but there could be others) and that's one possible explanation. When I first started on Metformin, I bought B-12 and began taking it as well, but I haven't been diligent in taking it like I should anymore. Hope this helps.