Metformin-Anyone on this trial?
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Thanks Gwen. I hope that you are getting the real stuff too!
VVH
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Hello everyone, I'm new to this forum and have started the metformin trial in june and 2 days ago was informed to start taking 2 pills a day (morning/night). I didn't have SEs with Just one pill but the SEs of both pills are horrible. I'm trying in hang in
I guess I should feel good that I have the really stuff!0 -
Hang in there, DC. You're GI system will adjust soon.
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I qualified for the trial, simply by having had breast cancer surgery within a year of the trial`s official start date. I didn`t have any side effects on the one-pill-a-day run-up until just before I was scheduled to go up to two-pills-a-day. Then, I had a week-long bout of really uncomfortable indigestion. It, eventually, settled down and I haven`t had any significant issues since, except weight loss (about 8-10 lbs) which has levelled off.
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Okay ladies - I was prescribed metformin by my PCP. I am just starting to take two pills a day and besides some nausea, I am having no diarrhea; in fact, I would say that I am constipated. Go figure?? Can anyone explain that??
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My clinical trial nurse said that - while it was far more common to have `loose stools` - it wasn`t outside the realm of possibility to experience the opposite of what was `normal` for me, i.e., if I `normally` tended to be slightly constipated, then experiencing `loose stools` was a possibility, if I `normally`had soft, frequent bowel movements, then becoming constipated was possible.
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I certainly wasn't expecting to be constipated while on Metformin! If I was participating in the trial, I probably would think I was on the placebo because I'm not having the usual SEs?
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Funny I am constipated too. I was thinking I was getting the placebo but maybe I'm not. I eat tons of fruits and vegetables and found myself more constipated after I took the second pill with supper. I guess everyone is different.
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Thank you all for giving me hope on the Metformin Trial. I am still only taking the one pill with no SEs, soon to be starting two pills. I still have some hope that I have the real "stuff". : ) Please keep your posts coming as I look forward to how everyone is doing!
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Just started taking two pills a day and on Monday I got moved back to one pill a day for one week. The SEs were horrible (diarrhea) and I couldn't stop having it. I was told to take immodium ad and I'm going to get reassessed on Monday to see if I can go back to two pills a day. I just realized that I have 15 days until my reconstruction surgery and I'm going to have to stop taking my meds for 3 days. I hope I don't start over again with the diarrhea when I start taking it again after the 3 days
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Oh boy, how I hate to give the bad news. I recently had to go off it for back to back CT's. Tummy was just starting to adjust. Had to stay off it for 5 days and IMMEDIATELY after starting up again, so did the diarrhea. Let's hope a 3-day window won't have the same effect. Good luck.
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Oh no, I start taking 2 pills tomorrow! I really hope that the tummy troubles won't get worse. At this point, I have found I can no longer eat eggs - I get a very bad stomach ache within 15 minutes after eating them and I've actually vomited a few times after eating them. I never know what's going to upset my stomach these days.
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Hello All!
My new onc is open to the idea of Metformin but when I saw her in June she preferred to wait for prelimary results from the clinical trial before prescribing it for me. She works at a site which is a provider participant in the trial. I saw my PMD this morning for my annual check up and he immediately wrote me a script for Metformin without any worries. His bottomline was Metformin is an extremely benign medication when it comes to side effects of any serious consequence. It has been used by PMDs for years and has a great track record for safety. Given the other medications I have taken for preventing a cancer recurrence, Metformin is a no brainer. I do not have any of the conditions that can predispose a patient to the one potential rare serious side effect of Metformin (Lactic Acidosis):
- I'm not over 80 years old
- I have no history of kidney, liver or cardiac disease
- I know to stop taking Metformin at least 1 day prior to any procedure requiring contrast medium and for 2-3 days following the procedure
Lactic Acidosis is an extremely rare condition ocurring in 3 out of 100,000 patients on Metformin and typically those patients have pre-disposing histories (see above).
SO...I now have (60) 850mg Metformin tablets (with 3 refills) which I plan to start at 1 pill a day for at least 4 weeks to see how much, if any GI upset I experience. I will then advance to the 2 tablets / day, same as the clinical trial protocol. Hopefully, the GI adjustment period will be tolerable.
Prior to starting, however, I plan to inform my new onc of my PMD's viewpoint and his willingness to write the script for me. I don't want her to feel I am going behind her back and really do want her honest opinion. I will keep an open mind regarding any objections, but barring a strong negative reaction from her, I plan to trial the Metformin. I do hope we hear preliminary results from the clinical trial soon, I just don't see the downside in going ahead and starting this medication now.
So.... a few questions for the Metformin experts out there.
- I assume it is best to take the pills with food? Once a day for the initial 4 weeks do you prefer morning or evening dosing?
- Typically my fasting Blood sugars run 85-100 at my annual testing, but I do not own a glucose meter. Should I buy one and start monitoring periodically prior to starting the Metformin to establish a baseline? My PMD says Metformin typically does not lower the BS reading but I am not opposed to tracking it, at least in the beginning, to be sure I am not an atypical responder.
- Any secret tips for dealing with the transitory GI symptoms I can expect?
Thanks for any insight or suggestions you can offer!0 -
Yes when you start and stop the side effects start all over again. I usually drop back to one pill while on long trips, but as soon as I increase my dosage oh boy. I have loss 9 pounds since January. I am not going to complain because I need the weight loss but the stomach issues is another story.
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LindaLou - as a Type 2 diabetic, I've been taking metformin for most of the past ten years. I currently take 2000 mg (1000 in the am and 1000 in the pm). I've gotten to the point that it doesn't matter whether I take it with food or not. It is generally advised to start out taking it with food as it can reduce the GI symptoms that you may experience. And I don't think it matters whether you take it in the morning or evening, just do the one that will be easier for you to remember.
Do you need a meter? My opinion, not really unless you start to have symptoms of low blood sugar - dizziness, shakiness, funky head feeling, etc. The meters are not too expensive but testing strips can be very costly. If you think you want to test, ask your PMD for a script, although that comes at the risk of identifying yourself to your insurance company as possibly diabetic. If you have to buy your own strips, WalMart's Reli-On brand is a good one and much less costly than other brands.
During your startup of metformin, avoid any products with sugar alcohols (like maltitol, xylitol, etc) and avoid products with olestra. Both of those can cause GI symptoms on their own, and combining with metformin can be troublesome until your system has adjusted. Also, some people do better with a low fat diet during the startup period.
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I asked the question before, but no one answered it
.......those of you participating in the trial......do you know how many milligrams of Metformin you are taking (assuming its the Metformin). My PCP gave me 500 mg tablets. She said to start slowly (which I did) taking 250 mg twice a day. Since I have had zero GI distress with it, I'm taking it once a day only......in the morning.......not sure if I should really be taking more than 500 mg a day. LINDA LOU - Why did your PCP give you 850 mg, I wonder? Somewhere along in my research of this drug and the breast cancer clinical trials, I thought I read women participating in the trials are getting a pretty low dose of Metformin.......maybe just 250 or 500 mg a day.......correct me if I'm wrong? Thanks for the info you provided too.....makes me feel more at ease about taking the drug "off label". My PCP was fine giving it to me also!
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WILD
I THINK the ppl in trials are getting 2000 mg total.I take mine with food.
IF I have diahreea at all, I later take a vitamim or CA as they cause me constipation!
I ONCE took a pill on an empty stomach. Never had so much gas inh all my life and the belly really ached.Just my experience. Good luck to all.
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LuvRVing
Great new photo!0 -
wildrumara, the trial dosage is 850mg twice a day.
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43 minutes ago wildrumara wrote:
LINDA LOU - Why did your PCP give you 850 mg, I wonder? Somewhere along in my research of this drug and the breast cancer clinical trials, I thought I read women participating in the trials are getting a pretty low dose of Metformin.......maybe just 250 or 500 mg a day.......correct me if I'm wrong?
Wildrumara, the dosage protocol for the clinical trial is 850mg daily x 4 weeks for the "ramp up" period and then 850mg twice a day for the remainder of the clinical trial period. I believe several persons taking Metformin outside the trial setting are adjusting dosages as needed to their tolerance level based on advice from their PMDs. I will start out using the same protocol as the trial and if I need to back off the dosage I will.
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LuvRVing,
THANK YOU so much for your most informative post! I do appreciate the tips and benefiting from your years experience with this drug. I will certainly follow many of your suggestions!
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LuvRVing,
thank you for all your info about diabetes. Do you have more tips to share with another stage IV diabetic?
http://community.breastcancer.org/forum/8/topic/791464?page=1
Regards
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Wildrumara - that is correct, 850 mg x 2 is the ultimate clinical trial dose.
LindaLou - my pleasure
Purple32 - thank you! Where are you in MA? We should meet up one of these days. I'm in southern NH right off I-93.
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Thanks for the replies ladies.....appreciate it!! Hmmmm.....so maybe this is why I haven't had much GI distress? Well, guess I will ramp it up a bit and see what happens. Have a wonderful weekend!
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LuvRVing
I am in Spfld, but I am not much of a highway driver. I am more of a 'city gal' (driver), but thanks!
Nice thought...and I do love NH VT , ME RI!0 -
I am 5 weeks since metformin trial, I saw my onc. yesterday and they did not test my blood levels for the trial, first time is scheduled for 6 months.
What I can see of the reports, I was in the normal range for everything, I was expecting something to come up. I almost feel like my records are not my business, every chance I get I am looking through the reports and they are always pulled out of my hands. If I ask for copies, I have to keep asking for them. Does anyone else have this at their hospital?
I also found that today I was extremely tired, had to have an emergency nap. I have not been told of this as a side effect of metformin? it was notable.
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Hi all,
Happen to find this disussion and thought I'd share the information I got on Friday. I was accepted into the clinical trail and went to pick up my drugs. The clinical nurse told me that I had to resign the consent form as criteria for inclusion had changed since I had signed it six weeks earlier.
I asked how the criteria had changed and was told that now "only those at high risk for a reoccurance" are being accepted into the study. Unfortuntely I qualify as I am triple negative and have a high oncotype score. Lucky me!
I had some mild side effects right after I took the pill and later in the day got that good old metallic taste. Today is day two, and I am basically back to normal with no side effects. Who knows what I am on. I just know that if I can contribute to how to treat this awful form of BC, then I want to try.
Up here in Canada there are no other studies for triple negative women. My MO, who is a triple negative specialist told me, with much upset, that triple negative BC is "not sexy" so no research coming down the pike to help stop reoccurances. So, I will do my part, and hope that somehow we start finding ways to end the horror of BC for all men and women who get this dreaded disease, triple negative or otherwise.
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BellaJean- How did you get an oncotype score being you are triple negative? I thought that the score was only issued if you were ER and/or PR positive, and Her2 negative. You are referring to the Oncotype DX score correct? Or is there another score? Thanks
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Hi All,
Here is part of the sage of craziness in my BC journey. My pathology report came back ER+ with 1-5% staining. So, I was told I was ER+ and off for oncotyping it went. Imagine my shock when I was told that the oncotyping came back that I was triple negative and I had a high score. Up to that moment I had never heard of triple negative, nor had any physician mentioned this to me.
Then, one MO told me the oncotype score was invalid, another that it is valid as in the original constructing of oncotype testing there were about 15% to 20% triple negative women who were included in the sample. I called California and spoke to the head of the lab and sure enough, I was told the same thing about the original samples: they included triple negative women. One has to wonder about about the validity of my score, but given that triple negative has a high risk of reoccurance, I am just going to do what i can to take care of my body.
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Just had my year follow-up w/ the study nurse. Things went ok. My blood was drawn and I answered the same set of diet related questions. I have loss 9 lbs. since joining the study. I just emailed her and asked if she saw any dramatic changes in my blood, and she stated everything looks normal (so whatever that means).
Best wishes to use all.
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