Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Metformin-Anyone on this trial?

191012141526

Comments

  • tectonicshift
    tectonicshift Member Posts: 102
    edited March 2013

    My PCP says she has no problem prescribing metformin for me. She asked me how much people are taking. 

    Is the trial dose 850mg twice a day?

    Anyone taking more? 

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

    Yes - 850 mg twice a day.  Congrats!

  • kathyrnn
    kathyrnn Member Posts: 366
    edited June 2012

    This is what kks_rd posted about the follow-up that is involved in the Metformin clinical trial she is involved in:

    "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."



    I am one of the people who chose to bypass the clinical trial, and get Metformin from my doctor. While Metformin is a safe drug that has been around for years, it should never be used without doctor supervision and monitoring.

  • BCinAK
    BCinAK Member Posts: 4
    edited June 2012

    The dose on the trial is 1 pill of 850 mg daily for a month and then 2 pills per day.

  • leggo
    leggo Member Posts: 379
    edited June 2012

    I just started on this. I will be taking 500mg once daily for 5 days, then 2X500mg for five days, then 3X500mg for five days, and finally 4X500mg after that for as long as it works. So just slightly more than the clinical trial when all is said and done.

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

    Gracie, I got kicked out of the trial because they missed that my tumor was a smidge too small. My pcp had no problem either. I started it the same way you did. Only difference is I do one pill of 1000 twice a day. Once in morning, once at night.



    BCinAK, what herceptin trial are you on? I am participating in a vaccine trial for early stage her2 positive people.

  • leggo
    leggo Member Posts: 379
    edited June 2012

    fluffqueen, nice to have the confirmation that the dosage I'm doing is correct. How are you doing on the 2000mg dosage? How's the tummy?

  • lecanto
    lecanto Member Posts: 2
    edited June 2012

    Hi I was diagnosed with breast cancer in November of 2011. This was a blow for me because I had been taking care of my husband who had been diagnosed with a rare diasease three years prior to my diagnoses. I am triple positve and have had both chemo and radiation. My oncologist said that I probably would qualify for the Metformin clinical trial. I had all of my blood work done and have had a chest xray. I pick up my meds today. I will let you know how it goes.

  • leggo
    leggo Member Posts: 379
    edited June 2012

    How are you all doing on the highest dosage? I haven't gotten there yet, but I'm already having digestive issues. Any hints?

  • Ossa
    Ossa Member Posts: 685
    edited June 2012

    Just started my second bottle of Metformin.. No symptoms unless I take pill on an empty stomach.. then I get nauseous..

    Was off it during my surgery and had all the symptoms ( nausea, diarrhea, bloating) going back on.. take this as a sign  am getting the real thing

  • leggo
    leggo Member Posts: 379
    edited June 2012

    Ossa, thank you. I didn't read the label. It specifically says 'take with food'. I never did eat with it. I bet it will make all the difference.

  • Ossa
    Ossa Member Posts: 685
    edited June 2012
    Smile
  • anne16
    anne16 Member Posts: 38
    edited June 2012
    Anyone heard from Chris-Meck and his wife that had the inflammatory breast cancer and started using Metformin?  Would be interested in getting an update from him! Hope she is doing well!
  • lecanto
    lecanto Member Posts: 2
    edited June 2012

    Hi LuvRVing,

    I am also from NH. I just started taking Metformin yesterday and am in a clinical trial in Laconia.

    I had problems that first night with diarrhea. Do you know if this is something that continues?

    Thanks for your time.

    Lecanto

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

    Hi Lecanto,

    I have been taking 2000 mg of Metformin a day for several years.  I had problems at first but now I just have a daily "loose" bowel movement.  I think your tummy will settle down in a couple of weeks.

    Happy to help!  You can send me a PM anytime if you need help with anything.

    Michelle

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

    I had issues at each stage, and then it would kind of settle in. It took a couple weeks after hitting the highest dosage.



    One thing I have noticed is that if I take the second one much before twelve hours, I have the big D.

  • leggo
    leggo Member Posts: 379
    edited June 2012

    Thanks fluffqueen. I kind of stumbled upon the twelve hour thing by accident. It really does help. Now that I'm doing that and eating with it, things are much better.

  • kks_rd
    kks_rd Member Posts: 99
    edited June 2012

    Hmm, thanks all for sharing about the <12 hours thing.  I take my morning dose at the same time but the evening dose can sometimes be quite variable (anywhere between 8pm and midnight).  I am regular every morning but will have pay attention to see if things are any "looser" or "more urgent" on the days when I took a late dose the evening before.  There are days when I have sudden urgency, for lack of a better way to describe it, and as Murphy's Law would have it, someone else is *always* in the bathroom at that time LOL (we do have a second 1/2 bath, but it's in the in-law attachment part of the house so I would only use in a true emergency).  I thought it was just because I eat a high fiber diet, never connected it to the trial before.  Will have to keep an eye on this, could be a good sign that I'm not on placebo after all!!

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

    I have  a question.

    If many of you are not diabetic, are any of you experiencing low blood sugar ?

  • Ossa
    Ossa Member Posts: 685
    edited June 2012

    Not diabetic and no low bloodsugars for me

  • leggo
    leggo Member Posts: 379
    edited June 2012

    Ditto for me.

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

    Ossa and gracie

    Do you have to use a test meter daily  ? ( wondering how you know your blood sugars are not low)

    I just had a  'pre diabetes' A1c result, and am trying to talk to my endo about prescribing.  She initially said no way, but with the latest test result she did say she would call to discuss further.  We'll see.

    Love to hear more about the chance of low blood sugars , testing etc etc ..

     Are ppl losing ( or gaining?) weight on this ?

    Any other side effects besides gastro?  Any bad med Rx interactions?  Anyone taking along with supplements ?

    THX for any add'l info!

  • shinypop
    shinypop Member Posts: 14
    edited June 2012

    I joined the study back in February and suffered horrible GI side effects. Gas, diarrhea, indigestion, and one other thing I can't even remember. I had to stop taking it. I tried a few methods that friends recommended, but I just couldn't bear the SIs. 

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

    I'm in!

    I just hung up from my endo dr.  Based on my numbers, she said I am pre-diabetic and she will RX me strating at one  500 mg day , then 2 , 500 mg and going up from there. She has also agreed to give me  a meter and RX the strips.

    She is extermely concerned that I am ' using this for BC' and will not be a party to that . I assured her that I understood this is NOT a cure in any way, and I have not closed the door on other treatments . ( though I am not currently taking tamox. or an Al, I am looking at GSE)

    She did say my INS  CO may give me  a hard time since she will not put diabetes down as a DX since I am not a true diabetic.

    We shall see .

    I appreciate any add'l info here or by PM
    Many thanks to all!

  • oaktownmom
    oaktownmom Member Posts: 38
    edited June 2012

    I'm not sure about blood sugar levels, but I'm on a break from the metformin trial due to pretty bad dizzy spells from the drug (which suggests low blood sugar).  They didn't test my glucose until I had been off for about 10 days, and by that time it was normal.  I may try to give it one more go, but this has highlighted for me the importance of taking this under a doctor's supervision - even though it generally seems to be a pretty safe drug, you never know if you're going to be in the small percentage that's going to have a problem.  I do think it's crazy that they don't track glucose levels for non-diabetics (which I am) more closely considering that it's supposed to lower them.

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

    I do think it's crazy that they don't track glucose levels for non-diabetics (which I am) more closely considering that it's supposed to lower them.

    I'm not really sure, but I know for me, I felt comfortable only with the meter and the follow up from my endo dr.

  • Ossa
    Ossa Member Posts: 685
    edited June 2012

    Purple32

    I have two diabetics in my home so have glucose meters available. I test myself 1-2 times a month Have never been lower than 5 ( I am in Canada and we use a different measuring scale than you do.. 5- 7 is normal) 5 is perfect sugars

  • purple32
    purple32 Member Posts: 1,767
    edited June 2012
    Thank you, ossa.  Good to hear!
  • luv_gardening
    luv_gardening Member Posts: 362
    edited June 2012

    Metformin doesn't directly lower blood suger.  From the Diabetes.co.uk site,

    How Metformin Works

    Metformin helps the body to control blood sugar in several ways. The drug helps type 2 diabetics respond better to their own insulin, lower the amount of sugar created by the liver, and decreasing the amount of sugar absorbed by the intestines.

    When taken alone, Metformin is unlikely to cause hypoglycemia or weight gain, but when taken in conjunction with insulin or a sulfonylurea both of these side effects are more likely.

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

    Purple - you can buy Metformin at Walmart without insurance coverage.  That's how I get it - $10 for a 3 month supply.  If your insurance won't cover the meter and test strips, you can buy an inexpensive meter at WalMart and their test strips are not as expensive as most.  Metformin does not typically cause low blood sugar, you should be just fine once your system gets used to it. 

    And as for supplements and other drugs with metformin...LOL!  Last summer when I was on chemo, I was taking about 10 different drugs and supplements.  I never had a problem.  I currently take it with calcium, Vit D, Valtrex, Losartan, Prilosec, Xeloda and Temazepam.  Last summer I added Emend, Vit B6, a prenatal vitamin, Pepcid, L Glutamine and Acetyl L-Carnitine along with an occasional Ativan and Compazine.  I felt like a chemical waste dump.  But all that got me through DD AC/T.   In the past ten years, I've never had a drug that caused a problem with metformin.