Tamoxifen and side effects
Comments
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I took tamoxifen for 5 years with almost no side efffects. I am not discounting or in any way diminishing the very real negative experiences of many women but I just want people reading these posts and anticipating starting the drug to know that the side effects do vary greatly from person to person. The experience does not always turn out to be a terrible negative. I actually lost weight on the drug. I had no hot flashes. (On the negative side I did have very ocassional leg cramps which seemed to be helped by exercising more. I also had a large endometrial polyp which I was told was clearly due to the drug and had to be dealt with.) For women facing the start of tamoxifen you can always decide to discontinue the drug if there are very negative side effects. I was very concerned about starting the drug. In retrospect I don't think taking tamoxifen effected my day to day life at all.
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I am also having the Tamoxifen weight creep. I joined a gym in June and workout 6 days a week and have watched 5 pounds creep on since I joined the gym!! I am doing strength training but still can't imagagine gaining that much in such a short time. And I'm eating less and better than before. It's actually quite discouraging....
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I'm seeing what I think is the Tamoxifen weight creep as well. I had lost 20 pounds in the 10 months before diagnosis and managed to maintain my weight in the 4 months following mx. I joined a gym in June and work out 6 days a week and I've gained 5 pounds! I do strenght training 3 days and cardio 3 days. Some people have suggested it's muscle weight but I can't imagine I could gain that much in such a short time. It feels like my body is just bloated. It's actually very discouraging.....
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I've gained 10 lbs since December...Tamoxifen????
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a bit of weight gain in the middle. I'm menopausal now due to chemo, and am on tamoxifen for 14 months now. Extremely fit and was lean and thin and athletic: now harder to keep the middle little, I blame tamoxifen and menopause together.
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I was on tamox from winter 2009 to April of this year. I had to stop, with my onc's approval, due to cumulative increasing se's that included worsening low back, hip, shoulder, neck and other joint pains and aches, as well as tons and tons of leg and arm cramps. Weight gain has been at least 20 lbs over the 4 years, mostly in the belly area. My primary care doc has said he has never seen me weigh this much. I have remained steady with slow increase in weight until last year. Worse se was that my vision was becoming blurrier and blurrier, which I attributed to aging (just turned 50 in Dec), and was increasing my readers. Once I stopped in April, it took about 2 weeks before I realized my vision was clearing up somewhat. I let my Onc know and she called me on a Saturday morning to tell me to get to an eye doctor as soon as possible as tamox can cause serious eye issues. Great. My eye doc was very very thorough and said any damage that was being caused by the tamox, and yes it is very bad for eyes, was being reversed because I stopped. I meet with my onc tomorrow and am not planning to go on tamox ever again and will not go on an AI, because I had se's that were really bad right off after trying each one of them. As for the weight, I am now working hard to trying to get rid of it. Eliminating white flour/white sugar and increasing protein and making an effort to work out every day or at least increase movement. I work full time and travel a lot for work, so I've been a bit lax with the exercising. My onc initially denied that tamox will cause weight gain, and they even denied the muscle pains and aches, but have since admitted to at least the pains and vision.
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Chelev,
Thanks for your experience!
It bugs me to no end when the oncs deny that our SEs have anything to do with our treatments! Funny.... Never had these issues prior to chemo! Ugh
Il be "trying" Tamoxifen when I'm thru with chemo/rads. I've already made up my mind that QOL is more important than that extra 3% benefit (if any) I'll be getting of nonrecurrance. If I have minimal SEs, great.... I'm afraid that if I have it as rough as you have... I'll be quitting sooner than later. -
ItIsWhatIsIs2013 - good luck - I was able to successfully deal with minimal se's on tamox for 4 years, but then it just got to be too much. I figured, I did the surgery, chemo and radiation and then tried all of the AIs and had such severe (I get terrible reactions to drugs - had to stop chemo due to secondary se's that were awful) that I was happy I was experiencing only slight se's with tamox.
The other thing they don't tell you is the weight gain. I understand it has to do directly with the fact of tamox and AIs being estrogen blockers or movers, and that there are reasons why the body gains weight, but it still sucks. Now trying hard to lose it.
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Hello ladies, I've come to cry on someone's shoulder. No, it's not on the cancer; the lumectomy and 5 weeks of radiation went without a hitch - in fact I feel guilty that I had no side effect whatsoever, apart from a red and slightly tender breast.
It's shingles! I thought the rash was a (7 wk)delayed reaction from the radiation as it was in the area of the booster rads so didn't catch it within the 72 hrs. No symptoms, no itching. The rash is fading - still scabbing to come off - but I have pain side/back and also centre of the chest and in the operated breast. I feel absolutely miserable!!
Am I one of the 40% over 60 (I'm 76) who will have on-goin pain? (a rhetorical question!)
Also, I have macular degeneration in the right eye and have now read - on another forum - that Tamoxifen damages the eyes! I have low bone density, so don't consider Arimidex an option.
In a couple of weeks I have appts. with my med.onc. and eye specialist on consecutive days so I'll speak to them about that side of things.
I go to bed on pain killers and a sleeping tablet but don't take the painkillers during the day. Normally I don't even have pain killers in the house.
I guess that's enough grizzling for the day but God, I feel miserable!
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Patricia3...
I'm so sorry for the shingles! I've heard that it's very painful. Are u on Tamoxifen & is there any indication of it bringing it on? I'm curious because I've had chicken pox like most & wonder about SEs from the Tamoxifen treatment ... This is the first IV heard of shingles!
I hope you are getting some relief!
Lorrie -
Hi,
I have not posted in a while. I am one of the fortunate people that has had manageable side effects from Tamoxifen(joint pain & cramps) . I have been taking Tamoxifen since 09/12/2012. I was dx 5/11/12 and I was also dx with Celiac 5/21/12. In July 2012 I started the Primal Blueprint lifestyle to lose weight. I managed to lose 13 lbs. in two months. I kept the weight off until April this year. I have a weakness for Cadbury Mini Eggs. Then May is my birthday month, so I had ice cream. In May I gained 8 lbs. now I have regained a total of 11 lbs. This is very frustrating because I have been very careful the past two weeks yet I have gained 2 lbs. instead of losing weight. Could it really be the Tamoxifen? Or is it my thyroid?
I'm sorry some of you have such terrible side effects. One of the things I have been wondering about is if having a mastecomy completely removes the risk. I have read many of the stories on the survivors forum where many women 40+ years ago had a mastectomy and lived long happy lives. I keep on thinking about this because I'm afraid of recurrence after my 5 years on Tamoxifen in 2017. Cancer never leaves.
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Hello Lorrie. I am on Tamoxifen, but I think the cause of the shingles was to do with lowered immunity from the radiation. Shingles ( I think I've already mentioned this) is caused by the chicken pox virus which remains in the body of anyone who has had chicken pox and can surface at any time - generally caused by stress(I believe) and lowered immunity which, we must have from our treatment. I certainly wouldn't blame Tamox.
It it"s very painful - and constant. I've had a Norspan patch on for 4 days - which doesn't seeem to be doing anything except make me ill in the morning. Going to see the doctor tomorrow.
I do hope you are progressing well and not having side effects so far.
txgal - I've heard that weight gain is a pretty much expected se of Tamoxifen but you can't be expected to give up your Cadbury mini-eggs! I haven't yet had that problem, only been on it for a couple of months and - with shingles and feeling ill - I've lost it.
You could have your thyroid checked - then you'd be sure.
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Patricia3 ..
I hope you find relief soon.... Stress? Who has stress while going through what we are? Haha.
I hope it goes away soon for you! -
Hi ladies! I am new to this thread. Was on Anastrozole for 6 months, started in December. Mix up at MO's office, they forget to tell me to come back after 1 month for follow up and SE's got so uncomfortable I had to go back. Now, have been off AI for about 7 weeks, SE's have lessened or stopped and lost 16 lbs effortlessly in that time (was told my food cravings had nothing to do with AI but it appears otherwise). MO wants me to start Tamoxifen so thanks for opening my eyes to what I might expect.
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Hi sisters. I a wondering if anyone has taken 10 mg Tamoxifen twice a day instead of once a day. I am back on it again as my ER+ has returned to chest area ( fter 6 years ) I failed all the other 3 drug choices after 18 months of them, I was crippled w/joint pains and could not stand up w/out pain. Anyway hard lesson to pay but now it Rads and Tamoxifen. On first week and nausea the main issue. I am not worried too much about weight gain at this point as I just want to stay alive to see my grandkids grow.
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Patricia3 so sorry to hear of your case of the shingles after treatment. You are a saint to be struggling thru this as a senior too. I hope it clears quickly but I know it can be weeks. I am getting ready to start radiation next week and know I never got the shingles vaccine yet. I guess it too late now until after rads. My insurance cost for the shot is high and I put it off. I have 2 little grandkids starting back to school here so just hope for the best.
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Thanks for the sympathy GrammyR and ItisWhatitis (just read that as it's meant to be read!). I'm certainly not a saint; I'm reallly feeling miserable - and cry a lot (and that doesn't do much good, either!) but, as it isn't the cancer, I shouldn't be whinging on this forum. I found a Aust. forum on shingles pain, but the comments there on others' experiences just make me feel worse!
GrammyR, my doc is of the opinion that the vaccine is not very successful in preventing shingles as the virus surfaces when the body's immunity level is down, in which case the vaccine doesn't work - damned if you do and damned if you don't! Incidentally the cost here in Oz is about the same.
You have obviously had a bad time of it. One hopes and prays that the demon won't come back and after 6 years had passed you must have been feeling quite confident.What a blow to the system!
Re. Tamoxifen - I am on 1x20mg tab a day and have not experienced any side effects. My med.onc. didn't want me to start Tamox. until the radiation had finished, the reason being that, if I had side effects we wouldn't know which treatment was causing it.
How long is your course of radiation? I do hope it doesn't affect you too much.
Here's a hug for you.
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Patricia....
Did they tell you how long shingles lasts? I sure hope you are feeling some relief soon! & thank you for sharing about the lack of SEs from Tamoxifen....
It seems like it's 50/50.... Some do, some don't ... I'm hoping I don't when the time comes!
Granny.....
I'm a new granny of 3! I'm 45 with a 3 year old granddaughter and 2 more born during my chemo.... 1 boy & 1 girl... I'm doing all of this disgusting, painful treatments so they will know their "gamma"... It's what keeps me from throwing in the towel sometimes!
Hang in there ladies!
Lorrie -
GrammyR
I take my 20mg Tamoxifen right after dinner and I really have no SE's except for maybe weight gain. Take care I'm so sorry for the DX you received after 6 years. We are here for you.
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Lorrie, discounting the 40% over 60 who have ongoing pain problems (not a good stat., in itself!) pain can last up to 3 months - presumably (hopefully!) reducing over that time. A couple of women I know who have had shingles still get the occasional sharp stabbing pain, years later.
Grammy, I also take my 20mg Tamox. in the evening
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I haven't posted in a long time since my BC treatment -- however, I started on Teva brand and had the worst hot flashes ever, every few minutes. I did some research here and discovered that many women preferred the Mylan brand. I did find it and NO FLASHES!! As of now, the 20mg Mylan is unavailable and I need it. I've called several pharamcies (like 20) and even my prescription drug company (express-scripts) can't get it. HOWEVER, -- it IS available in 10mg. I just ran out of my 20mg and I was told if I get a new script for the 10mg to take 2 pills once a day, my prescription company can get fulfill a 90day script for the 10mg. I am on Teva right now in the interim and I am suffering. Can't wait to start back on the Mylan brand.
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I was on Tamoxifen for five years. Eight days before I was to get off it, I developed a blood clot. This was in Nov of 2011. This past January I was told by my ophthalmologist (sp) that I had macular degeneration. Saw him again this afternoon and he confirmed this and said it was not bad. I got on the Internet and discovered Tamoxifen can cause macular degeneration. I've never seen that before.
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I am struggling with Tamoxifen and wondering if it's worth it. I have had lots of side effects and being only 43 I'm just not ok with hot flashes, insomnia and all the rest. Everytime I have a leg cramp I wonder if it could be a PE. That fear is magnified after having shortness of breath on tamoxifen last year. Even though it was pneumonia I still can't help worrying about blood clots. My doctor said it was ok to take a break from tamoxifen and I have felt much better off the meds, but wondering if I am crazy to stop it completely. I had LCIS last year and don't want to take my health for granted, that and I want to be here to watch my kids grow up.
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I am 44 and am struggling with tamoxifen as well.
Worse SE is bone pain and am taking vicodin to help with the pain.
MO had me to bone scan and thank GOD results were great!
No cancer.
What a relief.
I am trying to stay strong and continue on the tamoxifen but it is a struggle.
I have heard the younger you are the more SE you will have on the hormone Meds? -
AnnMarie,
My Onc told me the same thing about age/SEs... I'm 45 & not looking forward to it. He's not sure I'll be able to tolerate it, but I'm gonna give it a shot just in case I don't suffer as bad as he thinks??
Good lick!
Hugs to everyone!
Lorrie -
My MO actually said that my age would HELP me to tolerate the meds well. I just turned 41, have been on tamoxifen and zoladex for 8 months, and don't have side effects that (I feel) interrupt my daily life. I would actually think my SE's might be worse being on the zoladex as well, since it has put me in medical menopause. Yes, I have occasional hot flashes, but I notice them mostly at night. They come and go - some nights I have none, and sometimes I wake up once or twice. And I've always taken the Teva brand. Just goes to show that we all can have different SE's, even when we're on the same drug. Hugs to you all!
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Min937.... Good to hear! I'm hopeful to not have the SEs as well!
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Have any of you ladies developed edema in your calves and ankles...My calves are so tight and achy I think it may be the Tamoxifen. I have a job where I sit all day, I always had that kind of job, but I've never experienced this before. I've been on Tamoxifen for about 11 months and I'm wondering if this could be a new SE..If so, what should I do about it...Thanks in advance for your suggestions... -
I've been taking tomoxifen for almost 3 years. The last two months I have had VERY severe, severe cramps during my cycle (when I have one). Anyone else have this problem.
Thanks
T
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Hello Chelev,
I have neck and shoulders stiffness and pain after taking Tamoxifen for 2-3 weeks. Now it has been 5 months on tamoxifen, the stiffness and pain have never go away. When I asked the doctors, they (incl my onc) say it is not side effect of tamoxifen. But after reading your message and what I found from the internet, I believe the stiffness and the pain on my neck and shoulders are side effects of tamoxifen. Thanks for sharing your experience.
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