Community Champion
Posts: 3,167
Registered: ‎17-03-2016

Re: coming off tamoxifen

Many thanks for your kind comments, Littlefairy.
My feeling is, that if I was having issues with tamox, then I would feel better able to deal with any future recurrence if I had talked things through with my team first & reached a decision that I felt comfortable with.
Fortunately, I’ve been fine on it, so will continue as advised to protect myself as much as possible.
Loads of best wishes with it all
ann x
Member
Posts: 125
Registered: ‎05-10-2017

Re: coming off tamoxifen

i just wanted to say how joining the breast cancer care site has really helped me alot reaching out to other people going through the same thing and shareing their journey through bc ,knowing other people understand how your feeling and reading other peoples post and totally relate to it ,and makes you feel your not alone all the best to everyone on here xx little fairy

Member
Posts: 125
Registered: ‎05-10-2017

Re: coming off tamoxifen

hi ann thankyou so much for your very helpfull reply ,all through treatment i pushed myself to get on with it but finishing rads it caught up with me the emotional stuff that is i dont look back in the past some of it ive forgotton any way and i dont look to far ahead i stay more in the moment which i never could do before bc so its nice really ,im getting more stronger emotionally and being alot kinder to myself now than before ,i still get times when i feel so god vunerable but i deal with that better now even my bc nurse said i was quite layed back dealing with bc but it catches up with you at some point and i just accept the emotions now ,mmmm youve made me think now maybe i should stay on it i will ask my oncologist if i really need it and im not just being over treated and if i do stay on it for 5 years theres no way i will stay on it another 5 like they said ,im so pleased for the advice very sweet of you at least im haveing more good days than bad at the moment,and the moveing forward course im not gonna do cos i just want to get on with life and choose not to let it rule my life ,i feel very lucky cos if i didnt find when i did well my oncologist said i saved my life by spoting something wrong when i did i just thank the bathroom mirror for that one xxxxx little fairy sends you a big hug youve cheered me up just by replying Woman LOLWoman LOL

Community Champion
Posts: 3,167
Registered: ‎17-03-2016

Re: coming off tamoxifen

Hi Littlefairy,
I think quite a few of us have had a period of feeling low after treatment, it is a lot to readjust to. My treatment was all quite straightforward, but I still found finishing treatment more difficult than I expected.
Do talk to your team about tamoxifen, it is a long established & effective treatment in preventing recurrence & is one of the most well researched drugs out there. If bc recurs, it can be far more difficult to treat.
I was warned about the uterine cancer risk, but this is rare & far outways the risk of bc recurrence. I was also told easily treated, hence the importance of reporting any unusual symptoms such as bleeding.
Others here have reported trying other brands & a mild anti depressant helpful in managing side effects. Also is there a ‘moving forward’ course in your area? Your bcn will be able to advise.
Wishing you well with it all.
ann x
Member
Posts: 125
Registered: ‎05-10-2017

Re: coming off tamoxifen

oh and i forgot to say how since ive been on tamoxifen my memory has been awful and feel a very differant person now bc sucks and bc treatment sucks too ,not usualy moany but thats my little rant for tonight xx

Member
Posts: 125
Registered: ‎05-10-2017

Re: coming off tamoxifen

hi ladies i hope you dont mind me comeing on this thread its just that i have my oncologist follow up appointment after rads on monday and im thinking about comeing off the tamoxifen i have been on it since september ,im just not sure if i want to take it anymore it can cause so many other problems and its like poison and can cause other cancers mmmm,hard to make a decision isnt it ? little fairy it also gives you brain fog 

Member
Posts: 1
Registered: ‎26-11-2017

Re: coming off tamoxifen

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.
Member
Posts: 2
Registered: ‎18-11-2017

Re: coming off tamoxifen

Hi Chants247 - You don't mention your age. I'm guessing this could be menopause and not related to tamoxifen. I also had bloating and skin break outs about 4 years ago but had been on tamoxifen over 6 years and the only change was that I finally quit having periods about then. Since they were already down to every few months, I didn't think I would notice any change when they ceased entirely but this is what happened. My face cleared up and the bloating went away. I now just have hot flashes and some general weight gain - almost all in my belly but seems like fat rather than edema. It's unfortunate your MD suggested more testing that you can't afford. It would be helpful if doctors would not assume everyone can pay for their recommendations and would try to find some means for you to have these done at no cost. Hope things get better soon!

Member
Posts: 2
Registered: ‎18-11-2017

Re: coming off tamoxifen

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?

Member
Posts: 1
Registered: ‎31-10-2017

Re: coming off tamoxifen

Hi Ladies

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?
Member
Posts: 2
Registered: ‎11-07-2017

Re: coming off tamoxifen

Hi all

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?

Member
Posts: 1
Registered: ‎07-07-2016

Re: coming off tamoxifen

Hell Ladies!!! I need help and someone who will listen and maybe understand what I' m experiencing.

I took mself off Tamoxifen about a year ago-last August-because of all the side effects and the weight gain. .When I asked my oncologist if tamoxifen was making me gain weight he said no. This was after a very unexpected 9 lb gain. Mind you I lost 60 lbs prior to the treatment with WW, reached goal and was very sucessful and happy I finally got my weight under control. Then my weight continued to rise to a 20 lb gain. My oncologist finally admitted to this being the tamoxifin.After 2 years I decided to go off of it and had a small success with WW after 6 months with a 8 lb. loss. Well it's been almost a year since I went off of it and not only did I gain the 8 lbs. back but 3 more since my last visit 6 months ago!!!!!! When I asked him if it could still be the tamoxifen he told me no and that WW isn't working anymore and my age. I'm 63. I was not heard and I'm really thinking of not going back him. I have been very diligent with my WW program and the only time I had any trouble with weight gain was when I was on this medication. I am so tired of beating myself up because how can I not lose this weight when I have had such great success before? I feel so blessed that I had stage 0 with a lumpectomy and radation. I really don't think I needed to be on this medication anyway..

What I as wondering is if anyone has had the same experience? I feel like I.m still on the medication and it's not out of my system and I'm very upset with my doctor because he acts like it's my fault and I know it's not.. I could understand if I was eating cheeseburgers but trust me that is no the case. What I' looking for is answers and I keep hitting a brick wall. I have tried everything I can think of to get this weight off and nothing I mean nothing is working!

If anyone has a reply, comment, anything please let me know. I feel like it's all I think about and I'm tired of feeling like I failed. Thank you so much for listening to my rant and hope reaching out will enable me to rectify this problem.

 

Cronzoni

Member
Posts: 1
Registered: ‎25-06-2016

Re: coming off tamoxifen

Hello Everyone,

 

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.

 

Best Regards,

 

Maery

Member
Posts: 2
Registered: ‎15-06-2016

Re: coming off tamoxifen

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
Member
Posts: 2
Registered: ‎15-06-2016

Re: coming off tamoxifen

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...
Member
Posts: 3
Registered: ‎01-05-2012

Re: coming off tamoxifen

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.

Member
Posts: 6
Registered: ‎01-01-2010

Re: coming off tamoxifen

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

Member
Posts: 33
Registered: ‎01-05-2012

Re: coming off tamoxifen

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!

Thanks for the reply and take care
xxx

Member
Posts: 336
Registered: ‎01-05-2012

Re: coming off tamoxifen

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.

take care.
xx

Member
Posts: 33
Registered: ‎01-05-2012

Re: coming off tamoxifen

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! Smiley Happy"

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 Smiley Happy.