I have come off tamoxifen after 3 years (I am 39yrs old) as I hated it and felt I had too many side effects (I wanted a chance at getting pregnant too - and sex was so painful!) I’ve been off 8 weeks and feel like I have my brain back - I am no where near as emotional - I have a sex drive (although still too painful) but my joints still ache, I still get very hot (not as bad) and worst of all the breast I have left is really sore, especially the nipple - doctor said that the breast tissue has thickened but there doesnt appear to be any palpable lumps.It may just be hormones (those bloody hormones!)
Has anyone else come off tamoxifen early / had these side effects? - any advice on what I should do? feeling very vunerable as I got a second opinion to see if I should take myself off the tamoxifen early…starting to think I should go back on and just put up and shut up
LisaL, sorry no-one has answered yet…I have just stopped taking Arimidex because life was so awful with the side-effects. Dont be too scared, your body must be having a hormonal ‘bounce-back’, its bound to happen. I am post-menopause, but even I have a returned sex-drive in less than a week. Good luck, I am thinking of you and hoping you are ok
love Zoe x
p.s I think eveyone will be struggling wiht the new style website
Whilst you wait for the other forum users to reply to your post with their advice and experiences you may find it helpful to talk to someone in confidence on the BCC helpline. Here you can talk things through and the staff who are all either breast care nurses or people who have personal experience of breast care issues will offer you support and information. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
thank you so much for your replies - I was feeling a bit overwhelmed. I suppose there is bound to be a hormonal reaction, I think I will keep pushing myself to get it checked out and to try and build my life back up x
I am 34. I came off tamoxifen two months ago and I have the same issue with breast soreness. In fact, I found your post today because I was googling side effects of weaning off tamoxifen.
The breast I have left is sore and I’ve been getting sharp pains here and there. I was very worried at first, but the hormone theory makes sense. I guess hormones were suppressed with Tamoxifen and now the hormones are back! Ugh.
After thinking about it, and remembering what my breasts felt like before cancer, I realize that the bloated painful feeling is normal during ovulation.
Well, I just wanted to let you know I have that issue, too.
Hi, I have found it hard coming off tamoxifen also but in different ways. I am very hormonal and want to cry one minute and top of the world another. My mood swings are really intense and my stomach is swollen but I’ve had no periods as yet, (after 5 weeks). Breast wise, I haven’t felt anything but the overriding thing is the mood swings which are steadily getting worse. I’m a bit scared too but hoping this is normal and that it will settle down. Has your symptoms settled down over time?
hello, can i join you?
I came off tamoxifen about three weeks ago (without my oncs knowledge) But went back to see her this week and she has agreed to take me off tamox and zoladex for 2 months trial.
i have’nt had any side effects as yet - i assume this is because of the zoladex still doin its thing at the mo. But i have already lost a few pounds and generally feel more upbeat.
i am having touble sleeping - tho i was before, i was hoping it would resolve this. before i was constantly waking up during the night and had really disturbed sleep - now its just taking me hours to nod off in the first place. anyone else had a change in sleep pattern?
xx
Hello! I’d like to join you too. I posted on another thread:
“Hello! I haven’t posted on here for a long, long time. Am 39, now 18 months post diagnosis (Grade II invasive ductal ca with DCIS in situ) and had mastectomy and ANC. Currently on tamoxifen (I hate it) and zolodex. Got married last year, lost my beloved mum to ovarian cancer, moved house, was off work with depression and have just had a tissue expander inserted with a view to having a breast implant based recon. Feeling a bit like I’m still in cancer limbo. The treatment is going ok, I’m happy about having recon, but finding that cancer is still having a massive impact on my life. I don’t want to whinge, I know there are other people worse off, but my last visit to the onc made me realise that the tamoxifen may well have put me through early menopause and therefore I might not be able to have children. By the time I come off the zolodex I’ll be 40, and by the time I finish tamoxifen I’ll be 43. I’ve been through a lot but I’m not sure how to cope with this news. Just wondering what others experiences have been? Any advice much appreciated! :)”
Wish I’d seen this post first. I’m seriously considering coming off the tamoxifen. Had enough of the side effects and just didn’t know what to expect. Might even ask if I can have a trial break from the zolodex. Suppose I should ask to see the onc again? So much to think about. Will be coming back here to see how everyone’s doing and to compare experiences. It’s good to have other people in the same boat :).
hi special k,
crikey…you have been through the mill. i suppose with all the other stressful stuff going on it is hard to know whether you would be feeling pretty much the same regardless of the medication. Everything you have been through individually is enough to send any ‘normal’ person over the edge never mind all being at once and on top on cancer.
it may be worth discussin a short break with your onc to try and get back on track with everything else going on - but as my onc suggested it may not be completely down to the treatment. I’ve been referrred to a physhotherapist - do you know if your hospital can do this for you?
i beleive there is a blood test you can have to check if you are post meneopausal - BC nurse could tell you more.
i started with that bloatedness yesterday - really bad tummy pains and a stomach of iron…surely it cant be PMT this soon after stopping? I only finished with the zoladex this week. I guess i#ll have to wait and see.
Hi pixielox!
What you said makes perfect sense. I think I’ve just got to a bit of a low point and now might not be the best time to start thinking about coming off the treatment. I think I’m feeling a bit low being post-op and sore too, feeling like I’ve had enough of everything cancer-related :-S. But I’m going to make an appointment with the BCN and not sure about being referred to a psych via the hospital but know I can do this through work so that would be an option. Besides, not sure if I want the bloating and stomach cramps on top of everything else!
Hope you’re feeling better today, be really interested to read how you’re getting on in case I decide to do the same!
WELL LADIES after running out of tabs and having bad side effects ie
very tired , no sex drive, thinning of hair hot flushes not sleeping i feel like a new woman and its been a week ive been of tamoxifen which i have been on 2 yrs no breaks couldnt take the tiredness more than anything omg just cleaned up got a spring in my step only trouble hubby doesnt know ive come of tamoxifen god he go balistic but its me whos suffering think i rather be as i am now with quality of life than what i was i went to see gp and i told him how i felt he said about depression well cut him down there i am a manic depressive ( bi polar ) I NO WHAT DEPRESSION IS and this aint depression so that shut him up so he suggested i come of tamoxifen for 3 weeks for a break to see if it is the taxifen and i was right and i really not sure if i am prepered to go back on it just enjoying this freedom wow i got up from bed twice this week after 9 am and i felt like i slept and hot flushes have calmed down but think hubby has noticed the diff cause he asked me this morning if i had taken my tablet white lie i said yes
I have been on Tamoxifen for 5 years I managed my side effects. Now have come off at directions of my consultant. I am concerned that there appears little or no information about coming of such a drug… I know about the 5 year limit. Hot flushes are worse, stomach bloated. I feel for you all and send you my best and love.
I just recently went off it tamoxifen after 5 years. I am 5 years cancer free, and was initially told I needed to continue for 5 more years with the current studies. I was then called by my oncologist that there is a new pathology test that can identify if you are a candidate to go off of tamoxifen. I was one of the lucky ones, so I thought…I have lost both breast so I have no tenderness that I am aware of, but my body is going through withdrawals. I am 53 and my hot flashes are less often, but have worsened. The flashes come on so fast and I can feel the sweat beading up all over my body. It’s quite embarrassing when I am in my dance class next to other people. The flashes seem to last longer as well. There is also an odor as well. I smell mildew when I know my clothes are properly washed. I think it’s just my body purging chemicals out of my system? I just don’t feel right and hope this doesn’t last long. I gained 25 pounds after the first year of taking tamoxifen and I hope I can get back to my normal weight again. I don’t know even if I am in menopause or not, since the tamoxifen exasperated menopausal symptoms for the last 5 years. I feel like I am ranting, but if anyone has been there done that with tamoxifen, it would be nice to hear that I’m not totally alone in all of this. Maybe the summertime wasn’t the best time to go off of the medication when it’s 90 degrees outside, but here I am…
Hi Lisa, please don’t shut up. I hear every word you were saying and I feel your frustrations… I just went off the tamoxifen after 5 years. It’s only been a month since I went off. I too had multiple side effects, but felt I had to stay on it. I did have the gel brain too, but I have yet to get rid of that. I had no pain with sex, but the drug did take away most of my libido. There is a pathology test to determine if you are a candidate to go off of
Tamoxifen. I would ask your oncologist about it. I wish I had more information, but I am so new at stopping. If you got back on I found success with some of the symptoms that were very helpful. Sandy
I too have stopped taking Tamoxifen in secret. My loving husband insists that I take it every day with my vitamins. This week I started removing the Tamoxifen, and just taking the vitamins. I want to see if I feel any better. I gained at least 20 + pounds when I started taking it 4 years ago. When I was diagnosed, I was told that I had the earliest stage of DCIS. I had a lumpectomy and 16 weeks of radiation, and now 4 years later here I am. I remember watching a news broadcast about 4 or 5 months ago that said for the stage DCIS that I was in, it is now more practical to adopt a wait and see approach rather than under go surgery, radiation and 5 years of tamoxifen. This makes me want to scream.
I have had a low libido long before I started Tamoxifen. When I started Tamoxifen my libido became non-existent. My husband and I are celebrating our 7th year wedding anniversary this weekend, and we have not had sex in almost 3 years. I can’t remember the last time I had a sexual thought. Yes, my hubby is a saint. I know Tamoxifen took away the little sexual energy that I had, but even that little bit was once enjoyed in our marriage.
Due to numerous intestinal problems and an increasing weight gain (226 pounds), my doctor suggested I try the Wheatbelly Diet in January of this year. So I have been gluten free for 6 months. I have lost 16 pounds and I feel better; however, I feel I would have lost more if I hadn’t been taking Tamoxifen. With the weight lost my hot flashes are back, but until I am completely catch on fire, I can cope with this annoyance.
I have never felt emotionally well while taking Tamoxifen. It feels like an unwanted guest inside my head. My ability to quickly recall memories is being hampered by this drug. Sometimes I fear that I may be developing Alzheimer’s syndrome. Thank you for sharing your thoughts with me and reading my ravings.
Wondering if any of you have had this crazy experience with Tamaxifin. I came off recently after just three years. I am post menopausal. Tried Armidex before the Tam. and the side effects were more thanI could tolerate. At the suggestion of my onco. I came off 7 weeks ago. Main reason after many blood tests. Even tho my hormones were not too far out of line i developed many male charateristics such as dark male hair all over my face (like a Male), peach fuss under chin and down to my collar bone, bushy eyebrows, hoarse voice, increased dark hair on my lower legs, hair growth in arm pits ( have not had to shave for years), mustache, and lots of dark hair on my lower arms. Needless to say this really spaced me. The endocrinologist felt it was the Tamax. I have only found two others with this kind of experience that think it is/was tam. related.
Now that I am off for 7 weeks, I still have hot flashes, tired etc. I constantly fit the weight problem but keep working on it.
So question is has any one else had this eperience?
I have read all your stories and above all else I just to chat about my condition.
I was diagnosed in 2012 and after chemo, double mastectomy, zolaplex, herceptin and after taking the tamoxifen until about 4 months ago I started menstruating again and gaining weight. My skin is continually breaking out and I am so bloated I can hardly wear my normal clothes as before.
I went off to pills because I lost my medical insurance and out of fear of its side effects. So when I told my oncologist he asked me to get a menopausal test and go for more tests. Which I can’t because I can’t afford it.
I have read all sorts of horrible diagnosis, the worst being cervical cancer.
Has anyone had similar reactions but found that it was not serious?
I have now been on 20 mg tamoxifen for 10 years. It seems that most people on this thread were on 5 years. I did not have many side effects. I had gained 10 lbs the year I was on herceptin (a signficant gain as I am only 5’2") and typically weigh under 120. This 10 lbs gradually went away the following year on tamoxifen: Of course, I don’t know if that was due to tamoxifen or discontinuation of herceptin or both. I was premenopausal when diagnosed and menses resumed about a year after mastectomy and completing chemo and herceptin, too, but ceased again about age 50 as would be expected for non-cancer patients. Now that I’m at the end of year 10 on tamoxifen, I have unexpectedly gained 10 lbs in about 3 months and at my last appointment, my cholesterol and triglycerides were also very high, which has never happened before. This may be related to other life changes: I was very busy caring for a dying parent the last 2 years, which became intensive at the start of 2017 and ended with my mother’s passing in late April, but 10 lbs since August!
So, my primary question now is, should I expect to have side effects after discontinuing a drug I’ve taken every day for 10 years? I don’t see any indication that tapering from 20 mg to 10 mg for a while has been tested or discussed in the scientific literature. Rather than taking 20 mg once a day, I have always taken 10 mg each morning and 10 mg each night. From what I’ve read, there is no reason to think my libido will return, tamoxifen or not. I have hot flashes but had them before I started taking it, too, due to chemo. I don’t think tamoxifien made them worse and maybe even modulated them for a while. I am alarmed to think I will gain even more weight though. I am thinking of reducing my dose to 10 mg each night for a month to see what happens. There are no clinical trials of patients going more than 10 years, but my doctor wrote my prescription out to December even though he told me I could quit taking it in November. Thoughts?
I am so glad to find this forum. I have now been off tamoxifen for almost 2 months. I feel worse than ever. I had lost 20 pounds and was working out 3 days a week. Now my physical exhaustion is extreme and joints ache and muscles are cramping easily. I gained back the weight. I don’t feel foggy anymore. But physically am struggling. Hot flashes hit hard and fast. Can’t cool down easily. I am thinking of doing a detox and hoping it helps. Oh and bloating is a HUGE problem.