Calling all TNs
Comments
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To those taking metformin, for how long. When I asked my MO yesterday she said she didn't know and there are no studies saying for how long it is or would be beneficial. but to start on it and we will figure it out. Maybe like tamoxifen? 5 yrs but even that is changing to 10 yrs I think? I will start 850 mg 1x/day and she said to increase to 2x/day after 1 week as long as I'm tolerating it ok without SE. And while I'm asking questions, how about curcumin or tumeric? Who's taking it and how much, brand? And did your doc recommend?
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Lisa, my MO said for me to take metformin for 5 years from date of diagnosis. That's what I plan to do.
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Lisaj - I started out Metformin much slower. I started at 1/2 pill once a day for a week, then 1/2 pill twice a day for a week, then 1-1/2....... until you get to two a day. I was grateful to have no problems and have been on 850 mg twice a day for a couple of years now. I planned on at least 5 years.
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I agree with CatWhispurrer, start the Metformin slowly and be sure to take it with food. The only problems I have heard people had with it were gastro-intestinal if they started on too high a dose too quickly or didn't take it with food.
Doreen
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Simplelife, Is your Metformin dose 850 mg once or twice a day? My MO said No to it after chemo, but I see her again when rads are over and I will ask again. I d
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MomMom, yes, my metformin dose is 850mg twice a day. Also, I did start very slowly to avoid GI issues. I started with a 500mg pill split in half once a day for a week, then twice a day for another week. Next I went up to 500 in the morning and half a 500 in the evening for another week. The fourth week I did 500 twice a day. After the fourth week, I went up to the 850's and split them for a morning and evening dose for another week. I kept stepping it up slowly until I got up to the 850 twice a day.
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Mags - congratulations! I'm elated for you!
Well, I had a BMX with TE's Monday and all went well. I came home from the hospital on Wednesday and no sooner received a phone call from my wonderful, caring BS. She was calling to personally deliver the results of my path report … pathological complete response!! She then officially declared me cancer free and told me I had an excellent prognosis!!
I am over the moon!
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Allydp - Congratulations! I remember getting that phone call too. What a relief! Makes everything you've been through worth while, doesn't it?! I'm glad you've had your surgery and are now home to rest. Allow yourself the time to heal and be extra good to yourself. You're on the downhill side of this journey now. Woo hoo!Kathy
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allydp, smiling from ear to ear for you! That's the best news ever. Having that behind you, you'll sail through the recovery now.
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allydp,
Yippy! Relax, heal some, then go celebrate!
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Allly Let's all do the happy dance.
So very happy for you. Jan
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Ally that is the BEST NEWS! Happy tears happy happy. I know God has answered your prayers. And I know you and hubby are blessed with this great news.
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Ally the best news ever. Congratulations you have beaten this crap. Go celebrate.
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Ally...this is super terrific news...could not be happier for you! So awesome...thank you for sharing. Give hope to all.
Tomorrow marks the 3 year mark when I said goodbye to my girls...god they were gorgeous....new ones not so much but going for my tweak with surgeon and leaving on sunday for that...let's hope she works some more magic.
Maggie
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Mags if they are anything like you they will be gorgeous again. Don't give up the magic will come back. -
I'm new here, just trying to get my way around the boards to get this nagging question answered....So I'm having trouble wrapping my head around something my Onc said last week. I went in about 2 areas of concern. 1 small nodule that developed in my mastectomy scar and pain in the rib area on the same side. They were very quick to look at the nodule, Ultrasound was clear and they will check it again next month. I asked about a bone scan to check out the rib. The rib pain didn't seem to raise much concern, she said "we have time if it's mets, finding it now or later won't make any difference to your outcome." It's the second time since my diagnosis 3 1/2 years ago I've heard her make a comment like that about Mets. Everything I think I know about cancer is the earlier the better. Why isn't that true with Mets. If it was a bone met, wouldn't starting treatment sooner be better? I understand finding a primary before it's metastasized is always the best way to go, but doesn't early treatment benefit mets also?
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Dizzy...did you have radiation? I ask because that is known to cause rib pain to the side it was done on. That for me along with the number of lymph nodes taken causes some swelling for me in that area too. I have pain there all the time and have plenty of scans etc and there is just nothing there.
as far as that comment goes I have heard many say that their docs feel that way. My Onc is quite pro-active in that she feels it is best to get it beat down while the tumor is still small. I guess the reality is that you can live with mets for a time but eventually the disease will take your life.
Mags
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Yes, I did have radiation there. I have noticed some relaxing of the tissue in that former breast area and I'm hoping it's actually a symptom of my body healing from all the trauma. But, at the same time, sudden changes also force me to flip the coin and worry about the other side. I had a great response to my original chemo regime. I go back in a month for a recheck on my new bump, by then the pain will either be better or worse I guess. Ironically my next appointment is scheduled exactly 3 years from the day of my receiving the news about PCR. I'm hoping to leave this next one just as happy!
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Dizzy,
Perhaps like your onc, mine says with mets, each person's either will respond or not respond to treatment, so when you start treating them doesn't make a difference in time or outcome. We may disagree (I'm not comfortable either), but FYI that is what she said.
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Simple life, Thanks for your response on the Metformin dose!
Ally- Congratulations on your great news!
Placid - I know your MO is local DC area, does she consider Metformin?
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MomMom,
I asked her about it quite a while ago and she didn't recommend it for me, but I don't recall that she said no. Maybe I will ask her again at my December appt.
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Awesome Ally! So happy for you...what a wonderful feeling that must be
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I don't post on this board often, but I do read the posts.
Congrats Allydp, so happy for you!
Placid, my MO did say if my cancer came back I would not get more surgery & would be in palliative care and no follow-up scans required as they don't improve outcome. I also think the earlier it's caught the better, so I'm looking for a second opinion from someone who cares a little more about their patients. I have 3 small children that I want to see grow up so I'm going to be proactive even if I have to pay for the extra scans.
Thanks for talking about metformin. I have low to no estrogen receptors and my mo wants me to take tamoxifen. Well tamoxifen is known to cause uterine cancer which runs in my family, so I'm not so sure about that! Looking for alternatives including an androgen blocker.
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Hi Dizzy,
If you are not comfortable asking your doc to clarify her statement, you could always post your question on the Johns Hopkins 'Ask an Expert' breast cancer website:
http://www.hopkinsbreastcenter.org/services/ask_expert/ Hope you get some clarification.
Carol
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Canuck Mom, It sounds like your MO was taking about mets - not just cancer in the breast recurring if she was speaking about palliative care and no further surgery.
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Mags/Dizzy
I have had a pain on my BC side, which I had radiation on, if I twist slightly to talk to one of the other typists at work. The pain is in my ribs and is terrible when it comes but it only lasts for about 30 seconds then goes. I only seem to get it when I do that little twist. Also I get it sometimes if I am a passenger in a car and I turn to the left to put my seat belt on. I also have lymphoedema on that side and still have some swelling. It is really an awful pain when I get it but its been going on for so many many months that I figure its nothing to worry about just the whole BC thingy.
With regards to the mets my breast surgeon has said the same thing to me. 'Finding it sooner won't make any difference to the outcome'. That seems a bit double dutch to me when they are always saying early intervention is far better for your outcome.
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The doctors may say: 'Finding it sooner won't make any difference to the outcome' meaning that the ultimate outcome will still happen - eventually! But, it seems to me, that discovering it sooner could definitely mean a better quality of life during that time. Personally, I would want my doctor to want to find it sooner rather than later and try to do their best to manage it. Hopefully, none of us will have to deal with this at all.
Doreen
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Carol, thank-you for the link. I might do that. I will get my onc to explain that to me but it's been kinda grinding at my brain since I left all happy that the first Ultrasound was clear and I don't go back for another month. I think I'm starting to understand it. Basically they use their best "stuff" first, if that doesn't work (mets) they start on the next best "stuff", when that stops working, the next best "stuff" until there is no "stuff" left. If the mets aren't really troublesome, why put yourself through the treatment and waste the second best stuff? If you wait until you need treatment for quality of life, it works on everything that is troublesome and you get more milage out of the treatment. That's currently how I'm understanding it. It actually make sense.
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Dizzy that's a very good theory and it does make sense.
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I am taking Metformin and have been on 850 mg x2 a day. Will continue indefinitely unless I get any bad fluctuations in my every 3 month blood work, especially the liver. My Gyn whose wife has had very early BC prescribed it.
I am taking turmeric because there is curcumin in it. I came across it so many times in my research on preventing recurrence. I take it 1x a day. I take 450 mg. be sure that the brand you buy is good and contains over 90 per cent curcumin in it.
BTW, I've just read a great book on preventing cancer and/or recurrence. It's written by a Naturopathic Doctor who has had breast cancer and another health care specialist who has had ovarian cancer. It is titled Five to Thrive. It's really down to earth, cites research to support recommendations and focuses on these 5: Immune system, Inflammation, Hormones, Insulin Resistan, and Digestion. There are chapters on food, exercise, supplements, joy/love/laughter, excellent description of the cancer process as well. I highly recommend it. Going to read it through a second time this week.
Hugs,
Peggy
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