Metformin-Anyone on this trial?
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Weety thats my biggest fear. I have a new integrated holistic doc. Trying to get to know him before i soring something like this on him
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http://www.cancernetwork.com/conference-reports/mbcc2012/content/article/10165/2048312 this article is very good. I am also taking my husbands metformin, I asked all my doctors and all but one said no for a script for metformin. My oncologist suggested I find a study, I did but then my cardiologist said to wait...wth..so I am taking 250 after every meal, I will bump it up soon but for now this is what i am doing. Also my latest blood results did not show a drastic change in my glucose levels, it was similiar to my older results...
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clinicaltrials.gov is a good one done right here in Canada at mount siani hospital in Toronto Ontario
The study will be testing metformin in patients with breast cancer who are about to undergo surgery. Patients will take metformin 3 times daily for about 2-3 weeks prior to their surgery date. It is hypothesized that metformin will reduce cell proliferation rates in tumour tissue.
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Madpeacock:Thanks for the encouragement.We went camping this weekend- as good as a workout, packing and unpacking the trailer. I ache all over! But I'll go for a swim tomorrow.
Navymom: So sorry you've been so sick. "Normal" illness seems a bit unfair after all the other stuff we've been through! I think we should be given a "pass"!
Teeny71: I'm hoping the side effects mean I'm on the real thing.That's what keeps me going. I can't imagine some mad scientist putting side effects in the placebo just to fool us!
Weety: It seems sad but true that we appear to know more about this drug than our GP's do! I guess we have more invested in it.
I'm a basket case just now cos I go for my one-year mammogram onTuesday. Also I see the rad.onc. because the breast is still red and hot five months after treatment finished.. SoI'm kind of strung out.
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Update on that last one. The oncologist said the breast was fine, and the heat, etc. were normal. Also had the mammogram, no problem. Of course they don't tell you the results, but the technician grinned and said, "See you in a year!".
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That's what you want to hear! 0
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All sounds good for you Lindsay!
I am feeling better now, but still not 100%. I stopped my metformin for a few days. Just too many medications at one time and my gut was hurting. I agree with the free pass idea. We need one of those goofy red "easy" buttons.
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Glad you're feeling better NavyMom!
Just wanted to share: went for my physical today with a new NP at my PCP's office. Can't stand the PCP as he just does not listen. He's why I have gone to an integrative med dr for my autoimmune and general health issues. But, due to a required insurance physical, I decided to give this new NP a try. She was VERY thorough with the exam and got the whole BC history and what I was doing to treat - alternative and all - along with the autoimmune stuff which the PCP didn't even want to touch.
Even more impressive: I complained about some recent weight gain that I could not seem to shake. I'm very fit, very active, but do have thyroid issues. She wanted to check my prolactin, which is not only sometimes elevated in thyroid pts, but can be a contributing factor to BC!! Never heard of that link, so am excited (in my own weird way) to see what the results are when the labs come back. Treatment is a medication to reduce the prolactin. It was a good experience to find someone who really seemed to care!
Her only question: "Why are you on the Metformin?" I said it was a trial to prevent BC recurrence. "Oh, right. I heard about that. Just curious." Yay!
Thanks for reading, and just wanted to share the prolactin info for anyone this might apply to.
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Don't ya just love it when someone actually listens to what you have to say??? I just had my thyroid levels checked last month and all is good. I am also struggling with the chemo weight gain of 22 lbs. Interested to see how your Prolactin level comes back. Let us know.
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My MO won't write the script for Metformin. He said he would put me in the trial and even though I might not get the drug I would be helping other women. That is all fine and dandy, but I am stage IIIa with 17 nodes with an onco score of 6. I will get it from someone else. Everything he offered me for for studies. I need something to help me now. I really want to dance at my 12 yr olds wedding. I am going to Dana Farber for another opinion. My MO here is head of clinical trials for this area. I want a doctor who is going to focus on me right now. I don't mean to sound selfish, but I want to live.
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Dianarose... If you go on the trial and find you are not getting Metformin, you can always quit the trial.. I am pretty sure I am getting Metformin as I get nausea if I don't eat when I take the pill.. Plus the gas,,, ohh the gas.. My poor DH......
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My research nurse just left a message that my insurance denied me being in the trial. I'm so bummed. I wonder if my MO will give me a prescription anyway? He was willing to let me go into the trial.
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Goodie- I didn't realize that we have to pay to be in the trials. I thought if we were willing to participate we didn't have to pay. How costly is it? Metformin is on the $4.00 Walmart list I believe.
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Insurance denied it?? Don't know about your area, but it is FREE at Publix here! I think other grocery chains have it as part of their wellness programs along with certain antibiotics, etc. I went through my regular pharmacy to get mine at first, and it was $2.00 for a month's supply. So, no it can't be a cost factor!
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I have posted here before about my experience with Mefformin. I am type 2 diabetic, now controlled by diet, but I did take sulfanreas and metformin for several years till I could keep my weight down to a level low enough to keep my A1C in the 5-6 range. I was dx with IDC ER+/PR+ HER2- and have been thinking of going back on the metformin since I still have some. I have only seen my MO one time and will see her next week for the results of the ONCOTYPE DX. I dont know how she will feel about it by my PCP had told me when I went off it was totally up to me as it didnt cause low blood sugar crashes and was considered safe. The SE I had were explosive diahrea for the first couple of weeks but then that went away, I did lose 10 lbs within the first 3 months on it and didnt try, just was not hungry. The worst SE for me was the feeling of being cold, which would come on sort of like a hot flash in reverse. I had those the entire time I was on it. My PCP said yes it was a rare side effect but did it bother me enough to stop taking it and I didnt think it was all that bad.
Anyway I am going to start it again tomorrow andc call my PCP to get the prescription updated and just tell my MO that I forgot to list it on my med list. She already thinks I forget everything anyway, so what can she do.
I will beat this any way I can.
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Apparently the trial pays for the metformin but they rely on the insurance to pay for the regular doctors visits and regular tests. I haven't talked to nurse yet about why I was denied. I need to regroup myself before I call her back. I am also thinking I'd rather just ask my MO for it straight out and not have a 50% chance of not getting it anyway.
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Hi everyone. I started the Metformin Trial in late March and began the full dose (2x per day) in late April. In the beginning, I had the opposite problem; constipation. I also had a few days of mild nausea and a weird feeling of hypoglycemia if I go too long without eating. Does anyone else experience this?
Are any of you also doing ovarian suppression (Zoladex)? This made me dizzy the first month and the hot flashes began in month 2. Sometimes, it's hard to figure out which med causes what. But, my MO's office claims Zoladex does not cause GI issues. But, they also told me dizziness was uncommon. Upon checking the literature, it IS an SE! I am not crazy!!
I am wondering if you wouldn't mind providing a list of all your Metformin SE's, please? Thanks.0 -
Goodie, the study's required visits should more or less coincide with your regular follow-up visits with your oncologists. Insurance would be paying for those anyway! Hope you get a throough explanation so you can move forward in whatever way makes sense.....0
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Patriotic: I am also suffering with constipation and severe bloating. I am only taking 425mg in the am with breakfast. no other SE. I am trying to tough through this and am hoping it gets better as time goes on.
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Patriotic - I started the metformin trial about 10 days ago, and it sounds like my experience has been similar to yours. Some constipation (certainly no diarrhea) and felt a little nauseous the first couple of days. I figured I'm probably on the placebo, but you never know. I have a friend who takes metformin for her diabetes and has never had any side effects.
I too am on Zoladex - just got my second shot on Friday (I'm 40, BTW, 39 when diagnosed). I haven't had any side effects from that either - my hot flashes are actually much better than they were when I was on chemo. It may be early to tell though. For what it's worth, I have also had zero side effects from Tamoxifen, at least so far (just started month 5). So maybe I just tolerate drugs well (though the anesthesia from surgery gave me a horrible reaction!).
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NavyMom- I usually stop my meds when I have an important event to go to or a long trip to take. Study nurse said that it was okay and that she didn't blame me. Things have settled down but I still get a little gasey at times.
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I had to pay for my initial bloodwork and routine check-up, but I don't have to pay for the meds.
However, you are correct Wal-mart has metformin for $4.00. You really can't beat that. Everything looks promising so far I truly hope this study brings something to the table for TN's because we have no protection after TX and it is a very gray and scary place to be at times.
Smiles and hugs to all...
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Thanks, fighter. I read your post on the TN thread and was glad to see that you are tolerating 850mg twice a day. That is the dose I want to get to.
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I just entered this trial as I was under the impression that the only way to obtain the Metformin was through the clinical trial. Now I am seeing several entries here where individuals are obtaining a script without the FDA approved diagnosis. Have I missed something? Hate the fact that I'm in a double blind study. Will be doing some chemical analysis of my own to determine if I'm taking placebo. Apparently it's not uncommon for the makers of placebo's to insert ingredients that mimic the side effects of the study drug. Not only may I be taking a placebo, but a placebo whose active ingredients can be held in secrecy. Any one else feeling like a lab rat?
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Farmgal, I genuinely understand, even though I know trials are the only way to demonstrate whether something less toxic than almost all other therapies for cancer actually can provide significant benefit. People tend to believe almost automatically that diseases that are dangerous require the most nasty treatments to stop something like cancer, even though those things often don't work either. Without doing the careful trials, people are left to take something they think "might" help, that they hope will help, but could also be just a waste of time and effort.
I am a bit envious of your paricipation. I am not permitted to be part of the trials because I am now so far out from diagnosis with no recurrence that I'm not eligible.
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When I mentioned to my oncologist how women on the boards were reluctant to join trials in case they got the placebo, she looked most distraught and put her head in her hands, saying they were so badly needed. She has to see her patients fading away and in pain and wants so much to help them. But she also understood that each person has to do what is right for them as individuals. I guess it's a dilemma. But I believe they will get the trials completed due to the numbers of women being diagnosed. I'm optimistic about Metformin.
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Being in a clinical trial isn't always about getting a specific drug, it is about helping to further research. There is no scientific evidence that metformin reduces recurrence, just anecdotal evidence, that is why this is a trial. I am hoping that there is a correlation, and that I am on the actual drug, not a placebo, but if not, that's just that way it goes. We wouldn't have any of the drugs that we do to help us fight this wretched disease without previous clinical trials, and I am grateful to the people who participated in those.0
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I've signed up for the Canadian leg of the world-wide study. I'm quite willing to be a lab-rat if something positive comes out of this. I'm still having a hard time understanding, sometimes, why this happened to me, so I'm dealing with it by trying to " ... pay it forward ..." I've got nothing to lose and everything to gain if this turns out to be another weapon in the fight. And if it doesn't turn out to have any effect on breast cancer recurrence, then, at least, we'll know.
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I have to agree with dutchgirl and selenawolf, although I genuinely understand Farmgal's point of view. I greatly suspect that I do not have the actual drug, but have committed to staying on the trial. Besides the fact that my background is in the sciences and I respect the process, the great treatment protocol that, best as we know, brought me to NED status, rests on the backs of so many women before me. So placebo or not, I want to see the science move forward, for all of us and more...
I can only control what I can control. I'm BRCA1+, triple negative, so there's terribly little I can do to prevent recurrence. I doubt there's a doc out there who would prescribe metformin for me otherwise. So I'll take my chances on the trial....And I can exercise, eat well, respect my body, and deal with recurrence fears as they come....
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Farmgal,
I'm one of those who has posted on this thread and who is receiving metformin by prescription from my primary care doc. But I wholeheartedly agree with AA, Dutchgirl, Selenawolf, and kks rd.
You ARE a "labrat" if you are in the clinical trial. But somebody has to do it to answer the question of whether or not metformin works for reducing the risk of breast cancer recurrence. Women (and men) "labrats" have paved the way for us to receive the treatments we already have as standard. Some brave person years ago was the first "labrat" who ever put metformin in his or her mouth. Some brave person years ago was the first person who ever took Adriamycin, who ever took Cytoxan, who ever took Herceptin, and some person was the first who ever received those medications for breast cancer. I see an honor and an altruism to participating in clinical trials.
The metformin trials are different from many other trials because the drug is so innocuous. But many proposed interventions in medicine that were thought to be at best neutral and possibly beneficial, and also thought to be very low risk, have turned out to be harmful. A trial of beta carotene to reduce lung cancer risk showed that it likely increases lung cancer risk. Nobody expected that. A trial of Vitamin E to reduce prostate cancer risk showed that it may increase prostate cancer risk. Nobody expected that. Information derived from benchwork (studies of things like cell cultures) and epidemiological data (studies looking back at what has happened to different subpopulations of people) are always flawed and never give the absolute answer. Benchwork can never replicate something as complicated as human body. Studies looking at populations of people will always be confounded by other factors. The answer comes with these clinical trials.
So here we are with metformin - the preliminary work looks good. But there is no answer yet about whether or not it truly reduces recurrence.
I am myself taking it by prescription because I could not get into the trial. By the time I finally got an appointment in a research setting, my time window for entry into the trial was past by a matter of a few days. The only center near me enrolling is an overburdened public university medical center, and I did not receive my initial care there because the wait to be seen was so long and frankly their patient care is a mess. If I had thought to schedule try to schedule an appointment with them solely for the purpose of getting into a study earlier than I did, I would be enrolled in the trial.
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