Bottle o Tamoxifen
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Hi everyone ~
Psalm ~ HI !! after I finished chemo my onc told me to wait till 2 weeks after my exchange surgery to start my tamoxifen. And the weight loss is due to little appetite on tamox. WOO HOO. TRUST me I have a few chemo lbs and then some to lose.
Chasinghope ~ not sure about the plane ride.
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Chasing Hope -
The week I started Tamoxifen I unexpectedly had to fly (3 hour flight). I was talking to my oncologist about something else and mentioned the flight and he said that he didn't like patients to fly during the first month of starting the pill. He had me go off of it and start again when I came back.
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Psalm121: I started my tamoxifen in Oct 09. I was not told to stop taking it for my hyster/ooph in Dec or my exchange surgery in March. I was told to stop my vitamin E though(2 weeks before) because it can increase chance of bleeding problems---not sure if you are taking vit E or not.
TCK
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Oh Hannahbearsmom!! Thanks for the Vitamin E advice.....I AM taking it! And noone told me to stop it and they know I'm on it, because I gave them a list of my medicines 3 weeks ago! Wow, we really have to stay on top of things, don't we?
Hi Anne & Alicia....thanks for the replies and all the information....I'm glad I stopped the Tamoxifen and now will be discontinuing the vitamin E, too. I knew already that I shouldn't be taking NSAIDS and aspirins, but this new advice is sure appreciated, ladies, thanks so much!
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Psalm121: My PS allowed me to restart my Vit E about 1-1 1/2 weeks after my exchange--after she was sure that there were no bleeding problems. And if you haven't checked out the "exchange city" thread under surgery/reconstruction there is lots of good general info there about exchange. People there are in all phases of recon--just an FYI. Good luck next week
.TCK
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Hannahbears --
So how are you doing post-exchange? I have read a lot of the Exchange thread...fast-typing bunch of ladies! ....if I miss a couple days, I've got hours to catch up on! I will definitely be re-starting the Tamoxifen and Vitamin E, as you said maybe a couple weeks after exchange. Did they use leg massagers during exchange surgery, too?
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Chasinghope: Anyone who is on a long flight, even if you are not on meds or have health issues, needs to make sure to get up and walk around every hour or so to avoid clots. My mom is in pretty good health and had one after just a 3 hour flight. Make sure to rotate your ankles and flex your toes and justs keep all that blood moving along when you are in your seat too.
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HI everyone. So, finally almost two weeks after getting the prescription, I just took my first dose of you know what today. And as I swallowed it, I thought, "Kapow! Take that cancer!" All this time I have been so freaked out about taking it but now I'm going to think of it as a wallop to !*&#@! cancer. Then I drew little cartoonish fist and KAPOW! on the bottle.
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I lke that attitude, Gulp!
Mary
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YEAH Gulp - welcome to this elite club - and yes, the big T is keeping that bigger BC awayYEAH
(6 months in for me)
C
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Thanks bcamnb and YramAl! I'm glad I had a shift in attitude. Well, 3 hours down and no SEs yet! I've always been somewhat of a pessimist, but I am going to try and focus on the larger picture - that I am doing what I can to reduce my chance of a recurrence. Once again I am glad I heard about this thread.
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Love the attitude and the visual, gulp! Maybe you can take a pic of your little drawing and use it as your avatar on this board.
I agree, it's so easy to get caught up worrying about the bad stuff that might happen (or is happening) instead of celebrating the great stuff we're all doing to take care of ourselves, so thanks for the reminder!!!CS
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Hello Ladies!
I have been taking Tamoxifen since November 4, 2009, so about 5 months. Up until last month my menstral cycle has been normal. Then, last month I did not get my period. This month I got my period and it is insane! I have had terrible cramps, lower back pain and I am flowing sooo heavily. I have never flowed this heavily before.
I had an IUD placed in February, because I want peace of mind, while on Tamoxifen. So, I am wondering if the irregularity with my cycle is due to the Tamoxifen or IUD or both. Has anyone had a similar experience??? I hope this does not continue!!
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Margodae: How old are you? I am 49 and until last year had regular periods. Then all of a sudden they were further apart but heavier.....then further apart.......then I thought I was almost done (had been about 7 months) and day after mx....BAM.....a big one! Without tamox. It could all have to do with hormones and stress BC causes.
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BCinColorado: Thank you for the quick response. I am 29 years old.
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Margodae
Hello there and sorry you're having such terrible cramps and heavy periods. I've been on Tamoxifen since Feb 3rd and have not even had a period since my first chemo Nov 5th.....but I did try an IUD about 8 years ago and had extremely heavy bleeding and terrible cramps. Both of which I had never done before. My sister had an IUD and never had any trouble at all. I just think it is the same as medications and treatments....different people are affected different ways. I eventually had the IUD removed, I did really want to keep it and tried, but symptoms over-ruled.
This is not at all the same as your situation, with being on Tamoxifen and having the IUD, but I hope it helps just informationally......Best wishes to you
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Margodae, So sorry to hear you're having such a painful heavy period. Regarding your questions about that being because of tamox and/or the IUD...It's well known that tamox can change your periods (but may not). And its well known that IUDs can change your periods (e.g., from http://www.birth-control-comparison.info/iudinfo.htm: "Both the ParaGard and the Mirena IUDs can cause longer, heavier, and more painful menstrual periods, but this is much less common with the Mirena."). So, it's not surprising that your periods are irregular right now, but, I would encourage you to keep careful track of your periods (how often starting, how long and how heavy). And if they continue heavy and long, you definitely should talk to your GYN so she can monitor you and make sure you and the IUD (and tamoxifen) are compatible. A couple of months of long heavy periods won't cause anemia, but many months can, so it's important to stay on top of this and not just accept it as your "new normal" w/o reviewing it w/your GYN. Hopefully, you're just going through an adjustment phase to the IUD and things will calm down for you!
CS
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Howdy, all my tough and tender companeras.
This is a non-sequitur, but I thought some of you might be as interested and surprised by this as I was. I'd read some contradictory news-pieces about whether the phytoestrogen in soy is good or bad for BC survivors, so I did a bit of research this weekend. I located some peer-reviewed articles that found that the estrogenic compound (genistein) in soy does bind to ER+ cancer cells and does activate them, but it doesn't activate them nearly as strongly as does the natural estrogen in our bodies. The hypothesis, then, is that genistein (especially in the presence of some compounds found in fish oil) acts kind of like tamoxifen, by limiting the more harmful binding of estrogen to those receptors. The papers caution that much is still not clear about these interactions, and they do not recommend genistein as a supplement or alternative treatment, but they do conclude that it's probably not harmful to consume soy in moderation, and it may even be beneficial. There is a website that contains abstracts of these papers at: http://www.itmonline.org/arts/soyup.htm One caveat: these papers are all about 10 years old. I read about more recent (2009) research in a USA Today story: http://www.usatoday.com/news/health/2009-12-09-soy09_st_N.htm , but I didn't see the journal article itself.
As a lactose-intolerant soymilk-addicted BC survivor, I was relieved to read all this.
An update on my fence-sitting: I'm following my gut and I'm comfortable with the decision to decline Tamoxifen. The last time I saw my onc was a month ago, at which time I had agreed to start Tamoxifen at the end of April, and I'm not supposed to see him again until September. In the interest of disclosure, I plan to send him a letter informing of my decision and the reasons. I like and trust this doc, and I know he really wants me on T, but I'm certain it would do me more harm than good (for reasons outlined in earlier posts).
Hope spring is smiling on all y'all. Love and hugs, Ali
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Hey everybody!
For the Tamox newbies, I just want to say that for the first 3 months I had SEs but they have calmed down a lot lately. Sometimes I wanted to throw my bottle out the window
but I'm glad I stuck with it. I still have occasional hip joint pain but Ibuprofen takes care of that. Lately taking Tamox is like taking an aspirin, a total non-event.
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Hey kicking, thanks for the soy/genistein refs & info. I like seeing the original data like this.
And congrats on making a definite decision about tamox! Now enjoy your running and eat all your fruits and veggies and you'll be just fine!
CS
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Hi Tamoxipals! Something I was thinking about yesterday---when my med onc put me on tamox she told me that she was going to call in for a 3 month supply and wanted to know what pharmacy to call. I told her that I use Walmart pharmacy but that it's very close and I'm in there a lot so she didn't have to trouble herself to call in for 3 month's worth. She did anyway and now I'm thinking it is partially so that I will not have to think about refills EVERY month and that it probably decreases the chances that I would not get it filled one of these months!! Oh well, I've been taking it now for 26 weeks.
Last week I was able to enroll in a study on tamoxifen metabolism, so sometime this week or next I will find how how well I metabolize it---crossing my fingers because I want to get the most benefit out of it that I can!
Hope everyone has a restful night!
TCK
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My onc just wrote my tamoxifen script today..I am going to take it until I have an ooph late summer, and then switch to Arimedex since at that point I will be considered post-menopausal. Anyone been on this plan ?
thanks
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I went to a new gynecologist today-one who specializes in women's cancers. I went because I am just starting Tamoxifen-6 days now-and my onco thought I should have a thorough pelvic exam so any changes in my uterus can be noted as time goes on. I actually had an endometrial biopsy-OUCH!- because I mentioned that my periods keep getting heavier and heavier as the months go by. I'm 50 and keep hoping that I'll enter menopause, but it doesn't seem to be happening.
Gyn thinks endometrial biopsy will more than likely be benign...but boy, am I tired of medical tests at this point in the cancer game.
Mary
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Thanks, Mary. I see the gyne for the first time next week. I have been on T for over 6 months. Did you have a trans vaginal ultra sound? There have been numerous posts on this site saying women are having them....
C
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Hi. I did have a vaginal US. I was on tamoxafin for almost a year back in 2008. Then I ended up having bleeding (periods had stopped) and I had large cysts on my ovaries. My gyno recommended a complete hysterectomy. I had that in Aug. 2008. Then by Oct. my OC. put me on AI's. I tried 2 different ones for almost 6 months...but I could not tolerate either one. So she put me back on tamox...about 1 year ago. SOOOOOOOOOO much better. I do think the first 10 mos of tamox, caused the cysts...but overall...much easier for me to tolerate.
Good luck to all!
Lisa
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I did not have an ultrasound. That may come later, after I have been on Tamoxifen for awhile.
Mary
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Mary...I had mine because of my bleeding.
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Anybody have Tamoxifen side effects. Been on Tamox Since beginning of September. Had one month off in Februrary to see if my "side effects" disappeared. They did. This stuff is worse than being on chemo. Weight gain - 12 pounds so far. Adds joint pain - some joints already had arthritis. Then there is a severe fatigue. Whatever I do I need to take a break. I am taking recommended vitamins and supplements. I see my onc at the end of the month and I think I'm going to tell him I'm done with this stuff. At the rate I feel I'm giong I'll be bedridden within a year.
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Look into a supplement called DIM. It it made from the compounds found in cruciferous (Cabbage, Cauliflower, etc.) vegatables. My onc has heard of it but isn't on board with the naturopathic treatments.
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Irheere, So sorry to hear you're having a tough time tolerating the tamoxifen. This drug's side effects are so unpredictable. Since you're open to supplements, have you heard of glucosamine/chondroitin? It's been really helpful for joint pain/arthritis in everyone I know who's tried it (incl several others on this thread, and my husband and me). It's slow acting so you have to wait a few weeks as you use it but you might give that a try for the joint pain. I don't know where you live, but if you're in a major metropolitan area there's almost always a nutritionist at the cancer centers that you might consult in case there's any nutrition things you may have missed. Also, have you ever discussed w/your onc the alternative anti-estrogen approaches (ovarian suppression or removal plus AI's) which can affect women differently than tamox (although no guarantee its better). Your age and wehther you want (more) children come into play with those, but it seems worth the discussion w/your onc. And of course there is the possibility of just stopping the anti-estrogen approaches altogether. It seems like a renewed frank discussion with your onc (and perhaps a 2nd one too, for another opinion) is warranted about how much tamox benefit is likely for patients "like you" (disease characteristics, your age, other health issues, etc.) and weighing that agst the quality of life issues. I guess all in all I'm just trying to encourage you to actively seek out alternative paths rather than just gritting your teeth and suffering. 5 years is a long time to do that. Best to you in finding your right path!
CS
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