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Metformin-Anyone on this trial?

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Comments

  • outfield
    outfield Member Posts: 235
    edited March 2012

    Riley, I definitely told my oncologist.  He also wouldn't prescribe it for me, but when asked didn't think I was crazy if I pursued it through other channels.  

    The particular reason for letting all your healthcare providers know is that metformin's serious side effect, lactic acidosis, which is very rare, really only happens in certain settings, like when the kidneys aren't working full speed.  The contrast given with scans can occasionally cause kidney failure, so it's important to stop metformin before contrast is given.  There are a few other situations where it is similarly not safe.  So I want my docs to know.  

    Overall, it's a really safe medicine, as far as prescription medicines go, which is part of the reason PCP's, GP's, etc are so willing to prescribe it off-label.

  • riley08
    riley08 Member Posts: 5
    edited March 2012

    Thank you Outfield. I have a call into her now, and I am hoping that she is as receptive to the idea as yours was. I am just really excited about everything I have been reading about Metformin, and want to do everything I possibly can so I don't have a recurrence, as all the rest of us in this situation. You guys have all been very helpful.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited March 2012

    Just a speculation here.... I wonder if maybe they have a number of maximum people with the triple neg status, since they are trying to compare different cancer conditions as part of the study, and the maximum for triple negs maybe had been reached for that trial?

    A.A.

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

    Susan - Here's a list of clinical trial locations in the US.  I see you ar located in MA, did you try Dana Farber?

    http://www.clinicaltrials.gov/ct2/show/study/NCT01101438?term=metformin+and+breast+cancer&rank=6&show_locs=Y#locn

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited March 2012

    LuvRVing...I am trying to hook up with them. I left a message and got routed to a national trial center who said they were doing the work for Dana Farber and that the study wasn't open so I called several other places and was able to get a phone number for a trial nurse at Dana Farber. Called her today and left a message. Interesting though that there is no funding for this trial. I have an HMO and  will have to get authorization from my PCP to see the oncologist at RI Hosptial if I want to try to get into the trial there.

    Did anyone else run into this issue where you have to pay for your visits and bloodwork, etc or at least your insurance has to pay. I can possibly get into the metformin trial study in Rhode Island but my insurance is HMO Blue for Massachusetts and I will have to beg my PCP to get an authorization and then beg the study people to let me get my blood work done at my hospital that my PCP is affilitated with. 

    I think that because the drug is generic no one wants to fund this study. A good place for one of the breast cancer foundations to possibly put some pressure or funding into...I think.

    thank you KKS_Rd....your info was a great help also. I am so appreciative.

    LuvRVing  or anyone else...are you having any side effects?

    Thanks again everyone.

  • herta
    herta Member Posts: 5
    edited March 2012

    Paintingmywaythru - I love that painting! I started ramping up to the full dose of 2 tablets/day on Feb 17 and haven't managed yet to do more than 1 day at the full dose. Yesterday I took 1.5 tablets, then 1 with breakfast this morning and I didn't manage to keep breakfast down. The rest of today was dry crackers and flat gingerale and no more metformin. Tomorrow? I normally have a cast iron stomach. Anyone else with nausea vomiting? Does it get better? This little guinea pig is starting to think about bowing out of the trial.

  • Ossa
    Ossa Member Posts: 685
    edited March 2012

    I had no nausea, Just a lot of gas and more BM'S for a few days.. When I upped the doze same SE.Ok now though.. Started taking the pills Dec. 15

  • Babs37
    Babs37 Member Posts: 320
    edited March 2012

    I am still having stomach/GI problems with Metformin and I've been on it since last April. At my 6 months appointment, my clinical trial nurse told me to do another 6 months and see if it gets better. But it isn't getting better. Somedays I just don't take it because my stomach hurts and everyday it's diahrea. I don't want to stop it but I think I need to lower the dose. I take 850mg X2 a day. I always take it with food but it doesn't change the way I am feeling. On the days I don't take it my digestion goes back to normal and it feels good! I felt so bad in november, I asked for a abdominal scan to see if there wasn't anything else going on. The scan came back clear, no mets, but they saw something that looked like "fatty liver" and now I am going in for a abdominal US next wednesday. Could it be the reason that I am having such a hard time with the Metformin?

  • navymom
    navymom Member Posts: 842
    edited March 2012

    I have a question.  Since Metformin is given to diabetics to control blood sugar levels, how does it effect non-diabetics blood sugar?  Are you ladies that are currently taking Metformin having issues with LOW blood sugar?? 

  • outfield
    outfield Member Posts: 235
    edited March 2012

    NavyMom,

    Low blood sugar actually isn't generally a side effect of metformin.  Since it changes how your body responds to its own insulin, the body just doesn't put out as much insulin.  Most other treatments for diabetes do have the risk of low blood sugar.  

    Edited to add a little more.  

    Metformin is also used for some other medical conditions where people may not necessarily have diabetes, like polycystic ovarian syndrome.  

  • navymom
    navymom Member Posts: 842
    edited March 2012

    Thanks, Outfield.

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited March 2012

    Babs37- I am having gas mostly. The loose stools are random now which is a blessing.  

    Painter-Yes, I had to pay for my lab work, but I was charged as if it was a regular Dr. appt.

  • weety
    weety Member Posts: 371
    edited March 2012

    Yeah, outfield is right. It affects the way your body handles insulin.  I think it just makes your cells more receptive to it.  Navymom, I'm taking metformin and don't have diabetes (although I tended to be in the upper range of normal--fasting blood sugar usually ran about 98-102) and it seems the metformin has affected it just slightly.  I'm now running closer to 92-95 in the mornings.  I must be somewhat insulin resistant because I had gestational diabetes--but even that was easily fixed with minor diet changes during my pregnancy.

  • navymom
    navymom Member Posts: 842
    edited March 2012

    My Hgb A1C was 6.0 (should be less than 5.8) so I am thinking that I am also knocking at the door of early diabetes.  So getting a little help with Metformin seems reasonable to me.  I seem to be following in my Dad's medical footsteps....Dx with hypertension 4 yrs ago, elevated cholesteral last year and now ??diabetes.  Just hope I don't go to the cardiac problems(open heart surgery)  I am doing my best at eating a healthy diet and I exercise regularly.  wishing I could shed my 22lbs of chemo weight but it seems to be a permanent addition to my body!  I have an appointment with cardiology(for bp management) in 2 weeks...so hopefully I will come away with a script for metformin.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,795
    edited March 2012

    I was all set up on the study and they realized that my tumor was a smidge too small to qualify. My pcp prescribed it though. While preparing for the study, yes, my insurance cimpany was billed.



    I am kind of glad I was kicked out now, as I know I am receiving the drug, it is free through my grocery story and only $4 at Walmart, so I dont even involve the insurance company.



    For those of you who want to make sure you get the dose they are using in the study, it is 850 mg twice a day. I take 1000 twice a day and worked my way up to it over six weeks.



    I do have some gastric issues, but I also had fissures that werent healing after chemo caused issues. Thanks to the side effects of metformin, everything is wonderful now!



  • herta
    herta Member Posts: 5
    edited March 2012

    Nausea and vomiting made me stop the metformin trial 4 days ago. This little guinea pig has signed off the trial. Once my stomach settles I'll go back to drinking jiaou-gulan tea which affects the insulin pathways too. 

    Good luck to you all!

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited March 2012

    OK my PCP prescribed the starting trial dose of 850mg for me today.

    Can anyone tell me what blood tests should be done along with this?

    Or anyone inteh study, what blood tests are they doing on you?

    Thanks so much.

  • foreverhopeful
    foreverhopeful Member Posts: 10
    edited March 2012

    Hi Herta,

    Did you mean the tea you mentioned effects the insulin pathways the same Metformin would?

  • fluffqueen01
    fluffqueen01 Member Posts: 1,795
    edited March 2012

    Painting....you cant start one pill at 850. Break it in half and takr it twice a day if needed and work your way up. The trial dose is 850 twice a day.



    I am not having any special bloodwork done. I just read through my Study notes and it appears they would do bloodwork a few times a year. If you arent actually doing the study though, I dont think there is anything special to do.

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited March 2012

    Fluffqueen01 thanks so much. I started 850 last night. Gi symptoms as expected but will try to ride it out and plan to double in one month. Thought I needed liver enzyme tests done every 6 months may be wrong. My doc wanted to add a test to an upcoming blood test. Can't remember what she said.

    Thanks again.

  • Ossa
    Ossa Member Posts: 685
    edited March 2012

    Painting..

    I had a whole lot of tests done before I started.. Was given a bag with about a dozen viles Both regular size as well as some very small viles.. I was told I have to have blod tests done every 6 months.. Liver enzyme tests are one of them.. Do not know what the others are..

  • herta
    herta Member Posts: 5
    edited March 2012

    foreverhopeful, I don't know if jiao gulan tea affects the insulin pathways the same as Metformin but it does affect insulin pathways, so while on the study I was not to drink that tea. Here's a link about jiaogulan & insultin receptors. 

    http://www.ehow.com/about_6468881_jiaogulan-insulin-receptors.html

     drugs.com has some anti-cancer info on it: http://www.drugs.com/npp/jiaogulan.html

    I've seen jiaogulan listed as an alternative cancer therapy - boosts immune system, protects against DNA damage, anti-inflammatory, increases Natural Kill cell activity. I initially bought it because I liked the common name: immortality tea. 

  • JoanDavies
    JoanDavies Member Posts: 80
    edited March 2012

    I saw my onc on Tuesday for a 6 month appointment. She had originally pushed tamoxifen, which I stopped taking after two months on it and refuse to take now. So, I asked her about metformin. She said she could not prescribe something that was not a proven medication. (And I'm thinking, but you can support something that causes uterine cancer and other possible life-threatening SEs?) The person who came with me asked, after she left the room, what's with the scare tactics? (The onc said that although my bloodwork looked good, it couldn't detect the microscopic cancer cells that might be floating around in my body and that's why I needed the tamoxifen.) I was a little peeved that she just dismissed me, so I'm planning to call my PCP and see if he'll prescribe it.

  • gasurvivor2011
    gasurvivor2011 Member Posts: 150
    edited March 2012

    Are any of you on this not on a trial? Any side effects? How is it going for you?

    Thanks for any info.

  • MiniMacsMom
    MiniMacsMom Member Posts: 15
    edited March 2012

    My two oncs said the same thing about metformin... I have an appt with my PCP in April to ask him about metformin.  ON a side note, my onc didn't have any trouble perscribing a medicine for acne (yes I have had bad acne since chemo, but have NO desire to add yet more chemicals to my body just for something cosmetic) and it contains parabens :(  Something not so good for cancer...

  • outfield
    outfield Member Posts: 235
    edited March 2012

    Lisa, it would be worth it for you to read back through the thread.  Lots of us are on it, but not part of the trial.  Some of us have had side effects.  Some, like me, have not.  There is also an active threads in the complementary medicine forum, and an old one in Stage III.

    This medicine is different from something like tamoxifen in that many PCP's are very comfortable prescribing it because it's something they prescribe literally daily, and as far as prescription medicines go it's quite safe.  Oncs don't have that familiarity. 

  • lbrewer
    lbrewer Member Posts: 96
    edited March 2012

    IN Florida, Publix supermarket gives it away free

  • Patriotic
    Patriotic Member Posts: 30
    edited March 2012

    Considering this trial. Thanks for all the valuable info. If I get the placebo, I will exit the study. This may sound crass but with Stage III BC, I do not have the time/patience for a five year trial of a placebo. My Onc claims that there is not enough known about Metformin's safety to prescribe it to me. When I asked her if I should see my PCP for a prescription she said, "I would be pretty upset if your primary doctor prescribed this drug to you without consulting with me; unless you needed it (for clinical signs of Type II Diabetes). Hmm. She prefers I not obtain it from the PCP but it's perfectly fine to get it via her study (she is the principal investigator)!! Doesn't make sense nor sit well with me!!



    I agree with the others; there's already ample evidence to indicate it might help. Although,
    most say it's safe, you should be monitored by someone (PCP) while taking it. And another poster mentioned it's contraindication with contrast dyes.



    Good luck to everyone fighting to be their own advocate.

  • Wendyspet
    Wendyspet Member Posts: 103
    edited March 2012

    I just started the trial on Friday.  But I might have gotten the placebo because of no noticeable side effects.  The pills do have a "medicine" smell, but that could be part of the placebo, I guess.  My onc would not prescribe it either. 

    The clinical trial nurse said that if it is showing that much of a benefit, they could put everyone on it when they do an interim report.

  • LeesaAnn
    LeesaAnn Member Posts: 40
    edited March 2012

    Wendyspet -- did the clinical trial nurse say when they will do an interim report?