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Metformin-Anyone on this trial?

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Comments

  • navymom
    navymom Member Posts: 842
    edited June 2012

    Hello everybody.  Just wanted to share my current metformin experience.  PCP gave me a scrpt for 850mg twice daily and told me to start slow with a half pill and gradually increase.  I had immediate GI problems with severe constipation and bloating.  I tried treating SE with OTC meds and close diet supervision.  SE continued UNTIL I stopped taking my Calcium (carbonate) with vitamin D.  I have now been able to increase metformin to half pill twice a day.  I will try re-introducing my Calcium soon, but this time will try the calcium citrate instead.  Since Dexa scan shows osteopenia (thanks, chemo) I do not want to give up on the calcium.  And eventually I will be up to 850mg twice a day even if it takes another 3 months!

  • kks_rd
    kks_rd Member Posts: 99
    edited June 2012

    Hi everyone!  I had my six-month follow up this week.  They did labs (took like 10 tubes of blood!), took my anthropometrics, had me turn in the old bottle with any unused pills, gave me a new bottle, and generally wanted to know how things were going.  It was no more involved than any of my other follow-up appointments.....

    Hard to believe six months has passed already!  Apparently there will be continued check-ins every six months but the labs are at baseline, six months and at the 5-year mark.

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    My Endo dr. sad no way to this drug.  I  admit, I would be concerned about low glucose #'s since I am not diabetic. Are you all just monitoring yourselves with a glucose meter and if so , what happens itf your blood sugars do get too low ?

    Has anyone skipped hormonal ( or other) tx in the hopes that metformin would do the trick ?


    Many thanks for any reply.

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    I would love more info on this trial!

    What state (s) is it in ?  Pls feel free to PM me.

    THX

  • Ossa
    Ossa Member Posts: 685
    edited June 2012

    purple.. I only check my sugars about once every couple of weeks.. never been an issue .. I have been in Metformin fo almost 6 months no.. No low sugars...(I have both a  Type one and two diabetic in my home so know what to look for)

  • kathyrnn
    kathyrnn Member Posts: 366
    edited June 2012

    Purple32 - go to www.cancer.gov/clinicaltrials



    Once you are there select "find a clinical trial"



    On the next page to narrow your search, select breast cancer, put in your zip code. The next section lists all the interventions available, unselect the "all" and select "treatment" to narrow the search. Type in "Metformin" in the keyword line. It will then take you directly to the Metformin study (if it's available in your

    Zipcode range. If not, put in my Zipcode, 02780, and I know it will come up for you.



    You can find ALL the clinical trials available on this site.



    As to your question about testing. I only had

    slight problems in the beginning, so that's when I tested. I got weakly and shakey, so I knew what was happening. The solution is to eat a carbohydrate, (candy, oj, etc) to immediately to quickly bring up blood sugar, then follow it with a protein food so it doesn't bottom out again when the effect of the

    Carbohydrate is burned up.



    Hope I answered all your questions?

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012
    Thanks, Kathy!

    I'm off to check it out right now.
  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    Kathryn

    Thx once agin for the info!

    I went to the site and had trouble so I called. There is a trial *near* my state.  It is in Connecticut. 

     I am a bit discouraged because when I called and asked who would pay the person who answered (in Conn) said to go to my DR first. THEN go there ( to Conn.) and  then take it from there as far as who might pay !

    (Hello ?  Who has that kind of time to <possibly>  waste?)  I explained to her that if she didnt know the answer, that was fine, I woud contact someone else on MON.  But she insisted this was the way to proceed.

    I work FT and this is not 10 mins away, plus I would have to take time off for my own dr first etc ... oh, and I am dealing with the issue of BC - all fine and dandy if it is pd. for!

     Does anybody have any solid info on who pays for these trails ?

    Many Thanks!

    PMs welcome.

  • fredntan
    fredntan Member Posts: 237
    edited June 2012

    My insurance had to authorize it. I havnt started trial. Not sure if I am



  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    OK, here's the deal.  I do want the metformin.  I'm a believer.

    The problem is, I really dont want to chance the placebo!  I have an endo dr and I know she wouldnt give it to me ( spoke to her ) which stinks because I am PRE diabetic. I do believe she could justify it.

    Dont believe my BC drs would dole it out.

    My PCP would say to ask the endo.

    What's a girl to do ?

  • mary625
    mary625 Member Posts: 154
    edited June 2012

    Purple32--I would look for different PCs or Endos. If you are pre-diabetic or in addition have something called metabolic syndrome, I'll bet you can get it. I have the latter, and I got it from my PC. I decided I did not have the time to waste to possibly spend 5 years on a placebo. And since my parents both had diabetes and heart disease, things I worried about FAR more than BC in my pre-BC days, I want to do everything I can to prevent those illnesses. So I think Metformin is a win/win for me. I've never felt better actually. I used to have moderate to severe cases of hypoglycemia, but not so much since starting Metformin 4 months ago. Good luck to you.

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    Thanks mary.The thing is, after having 1 endo dr who refuses to Rx it's kind of ' in your history' and they have such big egos.  I actually do have metabolic syndrome and am PRE diabetic with occassiocal boderline high fasting numbers.  This dr .could easily justify the RX based solely on those numbers .  Many endos treat pre diabetes with metformin.

    May I ask what dosage you are on ?

    I just wrote this endo dr. an email , and  I am hoping being asked  a second time doesn't *p*ss* her off, but ...

    we'll see.

    THX!

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    Hi Navymom

    Good luck with the metformin.


    My CA. alone causes bloating and constipation. A stool softener ( NOT lax.) about 1x week seems to do the trick! I usually take one on the weekend. You may want to try it.

    Best Wishes to you!

  • DianaNM
    DianaNM Member Posts: 62
    edited June 2012

    Purple, I am like you. Realized I was pre diabetic in February 2010 when Oprah did a show about it, and it's in my family. But I didn't want to take meds, so I went on a low carb diet and lost 30 pounds. Still have 20 more to lose. I'm still on a moderately low carb diet (primal blueprint). 

    I had blood work done a year ago and after all that, my fasting glucose was 103. So I'm still slightly pre-diabetic. 

    I plan to ask every doctor for a scrip, my onco, the integrative doctor, and will go to my internist if that fails. Haven't seen the latter in years, but I know she had a bout with BC.

    My wound is not healing well, got an infection and some weird swelling. This can be due to higher blood sugar, and the extra insulin is not a good thing for recurrence odds. There is no good reason not to give you this medication. 

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    Hi Diana

    I am shocked to see my edno dr just replied to my email  on a  Satruday no less!

    She is not happy about me asking for it, and says the best she can do is order another A1C test.  As I replied to her, that's all well and good, and I appreciate it, but it may well be   tad better since I have tried to improve my diet.  The last one was at 100.,  I know *some*DRs would Rx at that.  I asked her to very seriously consider it.  She said she will under no circumstances consider this as BC  treatment-and I respect that.  No prob. there.


    I have to go for the second test and hope for the best ( worst ?)  now !

    We'll see what she decides.  I really hate all this waiting!

  • mary625
    mary625 Member Posts: 154
    edited June 2012

    Purple32--sorry to hear that your endo has again said no, but wanted to get back to you about your question. My dosage is currently 500 mg. ER but I am planning to ask for a higher dose.

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    Thx mary625

    I am planning to stop in tomorrow for another A1C test, but I have  a feeling this one might have better results!  ( Had I known I would have continued my high carb diet  :>)

  • BCinAK
    BCinAK Member Posts: 4
    edited June 2012

    I started the Metformin trial June 6.  I also am doing a herceptin trial.  I believe in the trials to help others and maybe myself if BC comes back later.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited June 2012

    Purple - I see you are in MA...Dana Farber is doing the metformin trial.  Any chance you can go there?

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012

    Thx LUVRVING

    Yes, I saw that. I decided with the time off work as well as the travel etc....I was not willing to do it and risk placebo.  If the trials were strictly with metformin, I would be much more interested .

    Thanks for pointing it out though.

  • WaveWhisperer
    WaveWhisperer Member Posts: 557
    edited June 2012

    I have been offered a chance to participate in the Metformin clinical trial by my RO. I need to decide in the next couple of weeks. What are the pros and cons? What things should I consider or ask my RO? 

    I'm so tired of blood tests and SE from chemo, rads and now Arimidex. But I also want to help with BC research.

    What to do??? 

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited June 2012

    WaveWhisper - I don't know all the details of the clinical trial, but consider the fact that you will be followed very closely during the trial period (5 years, I think).   I would think that would be a reassuring factor.

  • Thatgirl
    Thatgirl Member Posts: 34
    edited June 2012

    Is anyone on both metformin and the beta blocker?

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited June 2012

    WaveWhisper,

    Pro's: This medication has been used for a long time and so a lot is known about it. It is also an inexpensive medication, which is a significant exception to the rule for most medications used for cancer. Whether the improvement in results is from its effect on the metabolic action at the cellular level and better insulin control (google Dr. Lisanti and metformin to get an idea of the interesting research he has done), or whether the improvement in results for cancer patients is due to better weight control (particularly for the slowing metabolism of postmenopausal/postchemopausal status), or whether the improvement is due to both of those possibilities, the research for it may provide more protection from recurrence and as such, is quite worth participating in.

    Cons: Initial SE's including diarrhea and bloating, but also monitored for dosing; having the appts for being monitored carefully to acquire the most accurate data possible and to provide you with better comfort and safe use.

    A.A.

  • jenrio
    jenrio Member Posts: 22
    edited June 2012

    Metformin has a rare but life threatening side-effect acidoketosis.   So metformin on your own (especially if you are not being watched) is not advisable.

    Also, metformin can interact with contrast agent in certain scans, to cause kidney failure in some patients.   So you need to stop the drug before scans.

    Being on clinical trial can help survival because of you are being watched.   If you do join a clinical trial, please make an honest commitment, even if it's randomized.   There are also clinical trials that are more looking at the right dosage, so it's also an option for those who really want metformin.

    Good luck all 

  • WaveWhisperer
    WaveWhisperer Member Posts: 557
    edited June 2012

    AA and Jenrio, thank you for that helpful information. And you, too, LvRVing. I had not considered the monitoring to be a benefit, but I certainly see that.  

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited June 2012

    The potentially life-threatening side effect from metformin is actually lactic acidosis and it is exceedingly rare.  You increase your chances of developing this complication if you are a heavy drinker. 

    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001428/

     As far as I can tell, there is no condition called acidoketosis.  But there is ketoacidosis, a condition where the person has raised blood glucose levels and is dehydrated so that a metabolic acidosis develops (where the body's natural acid-base balance becomes disturbed).  It's a dangerous situation that requires immediate medical condition and can result in kidney damage.  But it's an issue usually related to uncontrolled Type 1 Diabetes, and not a side effect of metformin.

    My eleven year experience with Type 2 Diabetes and metformin and CT or MRI scans with contrast is that when I am scheduled for a test with contrast, I always have a complete metabolic panel labwork to ensure my kidneys are functioning properly, usually just an hour or less before the test.  I've never been advised to not take my meds prior to the test.  And  only once was I advised to skip the dose the same evening just after receiving contrast. 

    I don't think it's anything that someone should be overly concerned about.

  • jenrio
    jenrio Member Posts: 22
    edited June 2012

    thanks LuvRVing for the correction.

    I agree that metformin is a reasonable safe drug extensively tested in diabetics.   But most women interested are not diabetics, have normal or even low blood sugar to start with.    So home experimenting is still not good idea.   Clinical trials should tell us more, women are safer being watched while doing a long term experiments.

    This link has more info on contrast media and metformin and lactic acidosis:

    http://diabetes.emedtv.com/metformin/metformin-and-contrast-medium.html 

    And if someone still feels the passion of home experimentation, try this:

    http://www.amazon.com/Response-Parameter-Urinalysis-Reagent-Strips/dp/B001EUAXZM/ref=sr_1_1?s=hpc&ie=UTF8&qid=1339771582&sr=1-1&keywords=urinary+test+strips 

    It's not very sensitive/accurate, but better than nothing :-) 

    Best, 

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited June 2012

    Jenrio - I agree that anyone on metformin should have their kidney and liver function monitored on a regular basis.  Self-medicating with prescription drugs is not usually a good idea.

  • starella
    starella Member Posts: 101
    edited June 2012

    Hi,  I am on a beta blocker and metformin.  Avoid metformin two days before and two days after a contrast is used.