Any positive or "OK" experiences from Tamoxifen?
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I agree about all the negative stuff you read on these oards which is why I take some with a grain of salt. I'm not on Tamoxifen (arimidex) but the ones I know who are, do not have some of the horror stories written on the boards. Both have side effects as do all medications. Just the way it is and it beats the alternative.
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I have been on tamox since December 1, 2007 (I picked that day because it would be easy to remember in 5 years!). I have had very few SEs that I can attribute solely to tamox -- the main two being increased vaginal "moisture" (not rising to the level of discharge, but close), and a very strange one-- I used to take coumadin for atrial fibrillation and tamox is said to increase its action. In fact, in me it DECREASED coumadin's activity and I had to up my dose. Other possible SEs include bushier hair (instead of thinning hair as listed in possible SEs), plantar fasciitis (just developed, but I am 53)' some other muscle/joint pain including leg cramps (but I'm 53). I am still having regular periods, although I don't get cramps anymore. Tamoxifen is not an estrogen blocker -- it is a selective estrogen receptor modulator, or SERM. If your cancer was ER+, tamoxifen plugs the estrogen receptors in the cancer cells and prevents estrogen from reaching the cells' feeding mechanism. Think of it as a blank key in a lock ... With the blank in the lock, the real key cannot open the lock. Or, as I like to think of it, think of the cancer cells with little open mouths and tamoxifen as the duct tape that goes over them so they can't eat. Creepy, but effective. The amount of estrogen you have in your body remains the same... It will decrease as you move toward menopause (or if you are taking ovarian suppression, which is a different kettle of fish), but tamox does not interfere with your estrogen levels at all.
In faxe, I was doing so well on tamox that my medical onco bumped me back to once a year. My dx was DCIS 1 cm Grade 3.0 -
HappyLibby - thank you for the key and duct tape metaphor regarding how TX works. That is so helpful.
I have only been on TX a couple of months, but really am doing fine. I have some warm waves and chills and occasionally (right when my period should come) some PMS type mood swings. Thank God none of the horror stories others post. I agree that this is helpful to get it out there the people who are having positive experiences.
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Hi, guys. Tamoxifen is a drug that saves lives, pure and simple. Just want to correct one thing happylibby said. Tami can cause estrogen levels to change. I had the unusual SE of skyrocketing E2 levels which my gyn said can happen on tami. Seems the brain reads lower levels and sends messages to the ovaries to kick up production. So now I'm on Lupron shots to shut Em down chemically. Not such a big deal and E2 levels are back to normal. But something to watch for. No symptoms. Can only tell by blood tests.
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Sorry, sgreenarch, I should have clarified. Many many people think that tamox removes estrogen or blocks it from being produced. Your estrogen levels can change as a result of the tamox interacting with estrogen-producing tissurs in the body (my levels probably did go up a little since I am having regular periods), but it doesn't interact with the estrogen itself. I wasn't very clear there, sorry. And an interesting factoid about tamoxifen -- it was first developed as a fertility aid.
I also forgot to add that I haven't had any weight gain ffom tamox. I did develop fatty liver briefly, but that was because I was taking lipitor and then started tamox ... So my liver numbers started at a higher baseline. Everything trended down to normal once I stopped the lipitor -- and a delightful SE from tamox is that my lipid profile is AWESOME! Low total cholseterol, low bad cholesterol, high good cholesterol, without even trying!0 -
Happylibby, thanks for all of your insight. Great news re your cholesterol. Mine is doing the opposite. I'm eating healthier than ever and exercising and cholesterol is going way up. I've also developed gallstones which can be an SE of high estrogen, I think. Re wt gain, I havent lost or gained. Wouldn't mind losing ten lbs but it's not budging. Oh well!
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I had a really ruff start on tamoxifen but the MO kept telling me it would get better. I have been on it for almost 5 months now and my SE's have gone away. The only SE left is vaginal discharge, it is only slight and being that I have had vaginal dryness for 17 years I really don't mind it. Sex is much better. At 3 months the insomnia went away and at 4 months everything else went away. so even if you do have SE's it will get better.
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I have been on Tamox for 7 months and so far the only SE I have is hot flashes.
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Just chiming in with the NO side effects group.
... I jokingly call it my "fat sweaty bitch pill"....however, I haven't had any hot flashes....the only weight I've gained is a few pounds from stuffing my face and sitting on my arse after surgeries ~ having no problem losing it now....as far as the "bitch" part...well, my husband's opinion doesn't count....so "no" .
I've been on Tamox since February 1st and doing just fine and dandy!
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I had a lumpectomy in December for DCIS followed by 33 radiation treatments. I am 48. I've been taking Tamoxifen for two months, and I've had no side effects at all. I can't tell that I am taking anything. I was really scared before I started it, but all is well!
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Hi Cyborg: you've gotten a lot of good advice. I really like kmmd's post where she points out that it's mostly those women who have issues with Tamoxifen who come here to post about it.
I started Tamoxifen in April of last year. My medical oncologist wanted me to start immediately after finishing chemo but I was concerned that if I had SEs I wouldn't know if they were from the Tamox or from rads. I was glad I waited. A few days into rads I started to have pains in both shoulders, they pain moved down my arms. Within a couple of week my hands got really painful. The pain would wake me up at night. This seemed to have been a delayed SE from the chemo, but if I'd started Tamox I would have been blaming that. I went to see a neurologist who advised that it would probably go away on its own over the course of months. It did but took many months. Based on my experience, I think it's a good idea to delay Tamox until you are at least through with rads as even when you are finished chemo, you will likely still have lingering SEs and possibly some new ones too.
So I finally finished rads on a Friday in April and started Tamoxifen the following Monday. I was already have brutal hot flashes and night sweats, either from chemo or the fact that it pushed me into menopause. I continued to have hot flashes with Tamoxifen and the night sweats would wake me at night. But I think they were not as severe as what I experienced during chemo and at this stage they are much less frequent. They no longer wake me at night, nor do I wake up covered with sweat. Like others I may have been a bit hot-tempered in the beginning but I was even worse during chemo due to the steroids.
My main SE from Tamoxifen is weight gain. Again not sure whether to blame T entirely. I lost weight during chemo, but started to gain weight almost as soon as I finished. Within the first month, I regained all the weight that I'd lost and continued to gain weight through rads. I'm a massive 25 pounds heavier now than before I started chemo. I don't know whether chemo has really messed up my metabolism or I would have gained the weight anyway because of menopause. And of course onc never warned of this SE, although of course I was aware of it.
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Hi Cyborg! I too asked a lot of questions and I too like to hear the positives. I have been on Tamoxifen for two years with no problems. Well - I did gain weight, dry skin - but I blame it all on menopause. Otherwise, I feel great! Tomorrow I start my switch to Aromasin. I've heard the negatives which makes me nervous and scared but it'll save my life so I must go into this with a positive attitude. I'm getting up in age so I must take care of my body and that means taking vitamins and especially calcium for bones plus exercising and eating well which is what we all must do. Can't blame everything on medication.
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Hi there! Just passed my 2-yr. anniversary starting Tamoxifen, & after a slightly rough start, I am tolerating it very well currently. Main problems initially were pain in lower back (flare up of pre-existing back issue caused by doing too much too soon after a long period of inactivity), hips, and hands. Also had some pretty tough emotional/moodiness issues, but those went away when I went off Lupron, so I'm assuming it was the cause, & not the Tamox. Pain has almost completely resolved after following recommendations on this site to add Zyflamend, Fish Oil, and Vit. D3 -- I know they're helping b/c if I forget to take them, my body reminds me!!
Good luck, & remember lots of folks have done really well on this drug!!
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I have warm flashes, which are helped by limiting caffeine intake, and back/groin achiness. That can be a bummer. If I do exercise every day, it is more than manageable. And that's what I'm supposed to be doing anyway. I'm on month seven, and hope this is where we are "at" with this drug! I was 39 at diagnosis. Sadly, still no period (9 months pfc). We will see what the meno status is at onc meeting this July.
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Thanks for all the feed back. I think other ladies who are atarting with tamoxifen will appreciate the feedback .
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I've been on Tamoxifen for almost 7 months now, and am fine with it. For the first 3-4 months, I got hot flashes, but they were manageable. Then my hot flashes disappeared and my period came back, which surprised me. But as of now, I really have no side effects from it.
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Hi Ladies, I have been on tamoxifen for the past 14 months with very few side effects to speak of.
My period has become so infrequent (maybe 4 in the past 14 months, really light and only lasting 1 - 2 days) but thats not really a side effect, in fact its a relief! Also, my skin is great, no spots whatsoever!! No hot flashes at all.
Prior to tamoxifen, I took arimidex for a few months (while I was in chemopause). I had lots of joint aches and fatigue on this so overall, Im finding the tamoxifen MUCH easier to tolerate.....!
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I was on Tamoxifen for two years without SEs. Last spring I started feeling significant bloating/pressure in my abdomen and lower back pain. I would have just put up with it as part of middle age/perimenopause if not for my annual visit to the gyn which revealed the reason for my discomfort - an enlarged uterus the approx. size at 3 months pregnancy. Follow up ultrasound = thickening endometrium with 'areas of concern', cysts and fibroids and 'malignancy could not be excluded'.
Please be aware that the negative effects of Tamoxifen do not always reveal themselves with SEs and that it is important to have regular visits with your gyn to monitor uterus/ovaries.
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I started taking Tamoxifen in April after nearly two years on Arimidex. The side effects of Arimidex were formidable. I had stiffness, joint pain, developed bone loss, and sex was extremely painful. I felt my life was very negatively affected by the Arimidex. My oncologist (and two others) agreed that I should take Tamoxifen instead. They said that I already had the lion's share of the benefit from Arimidex and switching to Tamoxifen might cost me a 1% difference in loss of efffectiveness. 1% is worth it to me because I was miserable and felt old beyond my years. It is only three months since I started Tamoxifen, but I feel so much better. And guess what? The vaginal atrophy is reversible. It's not like it was pre BC, but I am majorly improved. My doctor said I could consider an estrogen cream or estring if I wanted to because the Tamoxifen would block the estrogen whereas Arimidex eliminates production of it entirely and if you used a cream the body would absorb the estrogen and it could feed any existing rogue cells. I don't think I will be needing supplemental vaginal estrogen. At least not yet. I'm a new woman. All I can say is that switching seems like the best move I could have made and I feel great. I no longer fear being intimate. I'll keep a watchful eye on the endometrium issue though, since that is scary. Has anyone else switched from Arimidex to Tamoxifen with good results?
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Penny I have a good friend that switch from Arimidex after 2 years for the same issues you said you had. She then spent her last three years on Tamoxifen and felt so much better. After Tamox her Mo tried to talk her into doing another AL for a period of time and she said no thanks.
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I have been taking Tamoxifen for about 3 months. The side effects have been very manageble for me. I have hot flashes here and there. I had vaginal moisture/discharge in the begining but it seems to be going away. Actually I did not mind, no need for lubrication. I managed to loose all the weight I gained during chemo.
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I love my tamoxifen. Makes me feel protected, especially for my healthy breast and no discernable SE. I do take a very small dose of effexor for the hot flashes, but I think those would be all gone anyhow b/c now cycling again. Good luck! Think positive!
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i've been taking tamox for 3.5 months - SEs mostly settled down after a month, and my main SE now is leg cramps (taking Magnesium helps to prevent them) and sleep problems. Definitely no SEs that would make me stop taking it.
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I've been on Tamox for 2 1/2 years now, and I don't get any side effects at all; no hot flashes, no weight gain, nada. So yes, there are those who don't have issues.
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Penny,
I am one who switched from Arimidex to Tamoxifen. I was determined to do well on the AI and gave it all I had but after 15 months I cried UNCLE. I had usual SE's of stiffness, joint pain, hot flashes and could have put up with them but I became so weak that I could hardly rise from a sitting position. I exercised like crazy and took all the good supplements but got worse and worse. I stopped Arimidex for one month and started Tamoxifen. Tremendous improvement. I do have hot flashes, always in the evenings but I can put up with them. So far everything has stayed good. My CA 15-3 is still low and I am NED. Let's hope it stays that way!
Good luck.
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Thank you for this thread!! I just started tamox and have been OK so far. Nice to hear that it can be done! My biggest fear is the weight gain and I decided that my life was more important than my vanity--the thought of it still bothers me, though! Hope I am one that doesn't get it.
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Janeybw, I sure hear you on that. In my case it was complicated by hypothyroidism and the drugs I took for hotflashes and neuropathy. So, if you notice it, I would work with your docs to make sure something else isn't going on. I think really what hurt me was after getting through chemo and losing weight, I wasn't prepared for being as careful on tamoxifen. I certainly could have handled it better and been more prepared. Because I exercised through chemo I was a little oblvious to how much muscle I lost, that hurt my strength and metabolism at a time I needed it. It is all manageable though. It really is, I just should have asked for help sooner. There are a few threads on here regarding exercise (I love the Motivation thread) check out one of those because getting in the exercise habit now will help prevent the tamox weight gain AND is good for fighting breast cancer
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This thread has been so reassuring.
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Cyborg, thanks for starting this thread and thank you everyone for chiming in on your good experiences. I've heard of so many people who've had a hard time, this helps to put things into perspective.
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Yes, Cyborg, it has been reassuring. Thanks, everyone! Best wishes to all.
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