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

Metformin-Anyone on this trial?

12021232526

Comments

  • maggs09
    maggs09 Member Posts: 74
    edited April 2013

    Nkb, did you start AI right away as a hormonal therapy or did you switch from tamoxifen?

    Are you experiencing any major SE other then constipation?

    Any weight gain?

    Are you on Metformin trial or are you also taking it off label?

  • nkb
    nkb Member Posts: 1,561
    edited April 2013

    Maggs 09,

    I'm taking the metformin off label, my MO wanted me to be in the study but my cancer is too serious to chance being put on a placebo and I also didn't want to be scanned so much. My PCP gave me the prescription with the blessing of the MO.

    I'm taking a arimidex because I'm postmenopausal. I may change to tamoxifen in a few years depends on continued research. I started Arimidex after radiation since my MO said there was some conflicting evidence about taking it together. I was about two to two and half months post-Taxol and still had muscle issues and mild neuropathy from taxol. The Arimidex caused a lot of joint and muscle issues for me, I could understand why some people stop taking it . I did a lot of stretching, started a yoga class with yoga teacher who knows about the issues you have with mastectomy , node dissection, chemo,radiation since she also volunteers at the cancer resource center. I started taking 600 mg of Motrin at night just so I could get out of bed in the morning, and there were days when getting out of the car after driving or getting up from a chair was extremely difficult. All of it is much better, probably because I'm six months away from the last Taxol and the yoga.



    I think I may have some insomnia with the arimidex also, although my MO says it's not Arimidex it's life. Insomnia started when my mother died right after chemo.

  • savgigi
    savgigi Member Posts: 245
    edited April 2013

    I have been taking metformin for 4 years because of Type 2 Diabetes. I take 500 mg twice a day with food. I occasionally have a little upset stomach but no other problems.

  • maggs09
    maggs09 Member Posts: 74
    edited April 2013

    Nkb, I'm sorry to hear about your mother.

    My dx was similar to yours, plus I had a lot of lymph nodes involved: 16/18;

    I hope taking Metformin will increase our chances of cancer free long and happy life. I also had ILC and research shows that Femara (AIs) seems to be working better then tamoxifen for lobular cancers (as well as any luminal B type). But since I was premenopausal before dx - my onc started me on tamoxifen. Now there is a question whether I should stay on it longer or remove ovaries and switch to AIs.

    I don't know what to do...

  • nkb
    nkb Member Posts: 1,561
    edited April 2013

    Maggs09- what a hard decision that is. More surgery!! although I guess they could do it laparoscopically. Do the studies help you with this decision?

    Yes, I have even more positive nodes than you, if you can imagine, and bilateral cancer

    as well. Quite scary.

  • zsterling
    zsterling Member Posts: 11
    edited April 2013

    Have any of you gotten a 'goose-bumpy' rash on metformin?  I've been on the twice a day dose for about a month -so I'm not sure it's due to the metformin.  It's mainly over my lower torso and upper thighs.  Sort of itchy, looks horrible!  My GI symptoms have been pretty minimal.

  • PeggySull
    PeggySull Member Posts: 368
    edited July 2013

    Hi, this thread has been very helpful to me.



    My oncologist would not prescribe Metformin until the results of the large clinical trial come out in 2016.



    I went to a wonderful gynecologist (wonderful in many ways) who did a liver function test and cleared me to start the drug with 500 mg. daily, working up to the clinical trial dose.



    Anyone here have sore muscles? He wants me to watch for lactic acidosis, particularly since I exercise daily.



    Peggy

  • kathyrnn
    kathyrnn Member Posts: 366
    edited July 2013

    Peggy - Yay for your gynocologist! I started at a higher dose, and had to back down immediately, because I had low blood sugar reactions the first 2 days. I switched over to starting with a low dose and worked my way up to 850 twice a day, with no further problems.



    I don't exercise regularly so I'm not so at risk for lactic acidosis. It is very IMPORTANT to pay attention to sore muscles. (My PCP, who prescribed it, told me quite clearly to pay attention to that symptom and call immediately if it happened. (His exact wording was......if you end up in the ICU because of a drug that I prescribed for you purely as an experiment.....I'll KICK YOUR ASS). Love my PCP!



    Just as an aside, I started Metformin about 4/12 and I believe I relapsed around 9/12. (It was 4/13 before I finally convinced my doctors.). There have been different opinions but the concensus is that it was always there, not killed off by the chemo and missed by the SNB.

    I am staying on the Metformin, because I think it may have slowed the growth. After 18 mo. The largest lymph node was only 1 cm. (I remember my initial tumor growing 1/2 a cm in the month before they started treatment). My hope is that even if it can't stop the beast, it may slow it's ability to grow, and buy me a little extra time.

  • PeggySull
    PeggySull Member Posts: 368
    edited July 2013

    Kathryn,



    Are you going to get any further treatment? Was it a local recurrence? Are you still on the Metforim? How are you doing?



    Thanks for the encouraging words. My gyn was just as stern about the muscle soreness. I take my first pill tonight. Fingers crossed.



    Peggy

  • kathyrnn
    kathyrnn Member Posts: 366
    edited July 2013

    Yes Peggy, it's a local recurrence. I should be starting chemo soon, and then followed by radiation. I'm going to keep taking the Metformin, as it seems to be causing me no problems. My PCP, would like to see if there are any results from the study, but somebody mentioned it won't be published till 2016.

  • PeggySull
    PeggySull Member Posts: 368
    edited July 2013

    Kathrynn, 2016 is what I've heard too about results from Metformin trial. Glad you're still on it. Hope I tolerate it as well.



    Do you know yet what chemo you're getting? So glad it's a local recurrence and not something else.



    Stay in touch!



    Hugs,

    Peggy

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2013

    What is the clinical trial dose? I just started taking 500mg. I have had some intestinal issues, but I heard they get better. I was taking it at lunch time but I was getting too tired in the afternoon so now I take it with supper. I am hoping to lose 5 pounds or so on it. The chemo made me gain.

    Kathyrnn-Sorry you have to go through chemo.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2013

    Good thing I just read the paper that came with my script. It says you shouldn't take it if you are having a scan with an injectable iodinated contrast drug and I am having a ct on Monday. I wonder if I am ok to still have the scan on Monday.

  • kathyrnn
    kathyrnn Member Posts: 366
    edited July 2013

    Peggy - I'm going to be taking CMF, but it's really just a crapshoot. There really is no research on what should be given for recurrences. Lots of research for Early Stage and Stage IV treatment, but no real research for what should be used for recurrences.



    Thank you Diana. The clinical trial dose is 850 mg twice a day, but I think the earlier trials gave a higher dose. (This current trial is testing to see what the minimum dose they can give and get positive results). I did have intestinal problems for about the first month but they settled down after that. I figured out that the weight loss must come from all the time spent in the bathroom!!!!!

  • kathyrnn
    kathyrnn Member Posts: 366
    edited July 2013

    Diana - I forgot to add that I had to have a scan shortly after I started the Metformin. They told me it was not a problem, but I would call them to check.

  • PatMom
    PatMom Member Posts: 322
    edited July 2013

    Dianarose, since you take it later in the day, I would skip the metformin tomorrow, and for a couple of days after the scan.  It doesn't interfere with the test, it is just hard on the kidneys to deal with processing the metformin and the dye at the same time, so they tell us to not take the metformin along with the dye. 

    It is especially an issue for diabetics who are already at risk of kidney damage, and since that is what metformin is usually prescribed for, the caution makes complete sense.

    The tech who administers the test should be able to tell you how long it is likely to take the dye to leave your system.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2013

    kathyrnn- I googled the question and it says to stop taking it either the day of or the day before, so I should be fine. I too have been spending a lot of time in the bathroom. Have you lost any weight being on Metformin? I have the dam mid-life belly. I really want it to go away. The last thing I want is for my stomach to stick out further than my implants. Undecided

  • fredntan
    fredntan Member Posts: 237
    edited July 2013

    I havebeen on 500 mg once day for months. no problems. I got it from well respected integrated oncologist. he said I coukd take it twice day. but cant get him to send in script to pharmacy.

    just going to take my request to my lcal pcp.

    does anyone have labs like liver function or kidney function tests every few months to make sure it doesnt cause damage?

  • kathyrnn
    kathyrnn Member Posts: 366
    edited July 2013

    Fredntan - I haven't had specific function tests for the Metformin, just the routine tests both my MO and PCP do.

  • PeggySull
    PeggySull Member Posts: 368
    edited July 2013

    Fredtan,, my gyn did blood work for liver function before prescribing and I will need to have this done every 3 months.



    Peggy

  • WaveWhisperer
    WaveWhisperer Member Posts: 557
    edited July 2013

    Kathryn, I had to have an unscheduled, emergency CT scan recently and I told them I was in the Metformin trial. They did bloodwork first, while I was waiting for the contrast. Afterwards I had to sign a sheet promising I would not take Metformin for 48 hours after the scan.

  • kathyrnn
    kathyrnn Member Posts: 366
    edited July 2013

    WaveWhisper - I'm actually glad to hear that. I got more the school of "nah don't worry". I think they were being very careful and proactive with you.

  • WaveWhisperer
    WaveWhisperer Member Posts: 557
    edited July 2013

    Fredntan, in the trial, I have to have bloodwork every 6 months.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2013

    What exactly is lactic acidosis and what do I need to watch out for?

  • PeggySull
    PeggySull Member Posts: 368
    edited July 2013

    As I understand it, lactic acidosis is when lactic acid builds up in your bloodstream faster than it can be used or excreted.



    This isn't the normal lactic acid process that comes from working out. My doctor told me to call him immediately if I was unusually sore or achy for no reason, felt weak, or was nauseous.



    I haven't had any of this so far but I also understand that if you're having surgery you should go off of it pre and post for awhile. Check with surgeon about how long to. Omit it.



    Peggy



  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2013

    Thanks Peggy

  • Babs37
    Babs37 Member Posts: 320
    edited September 2013

    Hi all. Just wanted to know has anyone seen changes with their periods (more frequent or more abondant) since taking Metformine?

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited September 2013

    Hi Babs, yes my cycle is heavier. Working on changing that, you can always PM me with questions.

  • katcar0001
    katcar0001 Member Posts: 321
    edited January 2015

    I see that this thread has gone quiet. Is there still as much excitement about Metformin? I am trying to decide whether to take it or not (just started, actually, but have only taken 3 pills so far). I found some more recent articles that sounded disappointing:

  • PatMom
    PatMom Member Posts: 322
    edited January 2015

    I have been taking a low dose of Metformin outside of the official studies for over 6 years now. I will continue to take it as long as I can because it works to keep my diabetes in control as well as any effect that it has on the cancer. I haven't had a recurrence of the breast cancer that was supposed to have a high risk of returning, but the Tamoxifen that I took for 5 years did give me endometrial cancer last year.

    Neither of those articles say that the Metformin is bad, they did say that the scientists have not been able to show the action by which it works for breast cancer. They are looking for what it works on so they can come up with something that has that same action which isn't a cheap, easy to obtain drug that has been available as a generic for a long time now. Finding that Metformin is as effective as other drugs that are currently in use without being able to document why means that they won't get a huge profit, and that is a huge motivator behind much of the current cancer research.