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coming off tamoxifen

47 REPLIES
Community Champion

Re: coming off tamoxifen

Hiyer Lisa,

 

This is a subject close to my heart. I've written about it on here many times, and I don't want to detract from saying that for most people tamoxifen works and they get no side effects or very few. For me, it didn't have few side-effects, and thats an understatement as I was told I had rare and severe responses to ti. I was removed from it by my consultant in the summer of 2016 after 6 weeks of absolute hell, physical and mental symptoms too many to list. It came down to quality of life, and I had none on the tamoxifen. I am very negatively responsive to hormone changes and had a past history of severe hormone issues, so it was no suprise to me that I developed the problems I did. I was so stressed and overwrought - terrified to take it and terrified to not take it. My 'temporary break' turned into a permanent break. I was a similar age to you (47) when I started tamoxifen (same treatment plan as you) and at 50 still haven't gone through the menopause...but thats a different story lol. I am gradually getting there in late peri , but who knows how much longer. The tamoxifen certainly kick-started my late peri, for sure!

 

So, what I'm saying is that you need to decide how much better life is without it to with it. As for 'should it be better now', in my own personal experience I noticed some instant changes for the better, but it took me a good 6 months to get back to a stable and normal condition. My hormones all needed time to readjust. At that point I started a thread called 'Progesterone, hormones and ...' eeek can't recall the title, but its still going now and has gone totally off theme. The point at the time though, when starting it, was that I was struggling to understand why I wasn't quickly changing back to pre-tamoxifen times. I did eventually though, but it seemed to take quite a few menstrual cycles to get there.

Community Champion

Re: coming off tamoxifen

Hello Lisa ,welcome to the forum .Im sorry you are having such a hard time with the Tamoxifen .Im not sure how quickly you would see a difference but I presume it stays in your system for a little while as you have to come off the medication for a few weeks before major operations .Have you discussed the percentage benefit you are getting from Tamoxifen with the Consultant ? Mine was very small 0.5 % benefit .
Member

Re: coming off tamoxifen

Following as I've had terrible problems with side effects - been on tamoxifen for a year since my diagnosis last December.  I genuinely feel like a different person - debilitating fatigue, brain 'fog', anxiety, mood swings, joint pain, eyesight issues (confirmed by my optician) to name but a few.

 

My GP declared me 'depressed' (I'm not) and prescribed strong antidepressants which you can't even take with Tamoxifen (??) and just said stay off work.  That's not the answer.

 

My consultant has now decided to take me off for two weeks to see if I have gone through menopause, he will then switch me to Letrozole (I'm nearly 45 not convinced I yet have) but my auntie had the same issues, moved to Letrozole and her side effects are even worse!


I just want to feel like me again, I was such a fit and active person before all of this and feel stupid complaining but I just don't have the same quality of life.

 

I had WLE, rads with extra boost (ended that treatment in March) and prescribed hormone therapy, so didn't even have chemo so don't understand why I'm feeling so utterly terrible.

 

I've only been off it two days and wondering if/when I should feel a difference, if any?


Thanks for reading.

Member

Re: coming off tamoxifen

Go to your oncologist... asked for blood tests at gp for hormone balance
Member

Re: coming off tamoxifen

Well today was a great day. I finally got to see the Oncologist and breast care nurse. They were wonderful. I told them my life was hell and I couldn’t bear the side effects anymore. I am coming off for 6 weeks to see what difference it makes and to determine what is menopause and what is Tamoxifen. We are going at it with a multi pronged approach to address some symptoms.
Member

Re: coming off tamoxifen

Hi everyone. Re coming off Tamoxifen. I have been on it for 2 years after having a lumpectomy, radiotherapy etc. I have felt like coming off it since after the first 3 months, but I am to afraid. The side effects are awful, the worst for me being the hot flushes and vaginal atrophy. I'm 67 years old and went through the menopause about 13 years ago. I've also got lots of joint pain. I suffer from ME, Fibromyalgia, Hypothyroid plus a few more things, so a lot of the symptoms I have had for years have become more severe. I just feel as if the side effects from this have been the last straw x

Member

Re: coming off tamoxifen

Thank you Jill1998 I’ve got some mri’s coming up, I’ll ask my oncologist about the new drug or if I can come off it. Without any reoccurrence. Thank you
For you help.
Community Champion

Re: coming off tamoxifen

Hello Oreolover ,welcome to the forum .Im sorry you are having such a dreadful time on Tamoxifen .Have you discussed how awful you feel with your Oncologist / nurse - there may be other options to try ? You should also discuss what percentage benefits you are probably getting from Tamoxifen in terms of re-occurrence - it can vary quite a lot from person to person and may help in your decision making .Have you tried different brands of Tamoxifen as some people find certain brands a lot kinder than others - Teva brand was best for me . Good luck with your decision .Jill x
Member

Re: coming off tamoxifen

Hello ladies, I’m 32 years old was diagnosed with breast cancer when I was 29, got a lumpectomy and radiation in 2015 and have been on 20 mg tamoxifen for 3 years. I'm really contemplating on quitting the drug. I’ve beber felt worse. I’m 5’0 ft tall and used to weigh 109. I’ve gained about 15 pounds and these emotional breakdowns don’t seem to end. I’d like to know if you ladies know the good and the bad of coming off the tamoxifen. If the mood swings are worth it? Or what drugs I can take for the weigh gain or the mental disfunction I seem to have ever week. Please help!
Member

Re: coming off tamoxifen

Bunny2012

 

Just FYI, I recently saw my Oncologist and she told me that new studies have shown that taking a hormone blocker like Tamoxifen or Aromisen (spelling?) for an additional two years (so, seven years total) is as effective as taking hormone blockers for ten years. I have two more years to go on Tamoxifen and I have just started having excessive sweating. I also take Cymbalta to help with joint pain and it has helped me a lot. I am 75 years old and exercise daily.

I hope this helps.

Jan Marie

 

Member

Re: coming off tamoxifen

Bunny2012

 

Just FYI, I recently saw my Oncologist and she told me that new studies have shown that taking a hormone blocker like Tamoxifen or Aromisen (spelling?) for an additional two years (so, seven years total) is as effective as taking hormone blockers for ten years. I have two more years to go on Tamoxifen and I have just started having excessive sweating. I also take Cymbalta to help with joint pain and it has helped me a lot.

I hope this helps.

Jan Marie

Member

Re: coming off tamoxifen

I’ve been on tamoxifen for six years and came off it for a week. Since having bc I’ve sufferred with the worse depression of my life, joint pains, chemo fog, fatigue, hot flushes and I thought I could just stop taking it. Unfortunately it made my depression worse so I went back on it again. And I’m just putting up with the side effects. Myates sorry to hear you’ve got it back but please think about going back on it. I lost a dear friend who came off it too early. I have to take it for another four years but it’s worth it. Hugs x
Member

Re: coming off tamoxifen

I had a stage 3 fast growing tumour in my left breast in 2012.
Full mastectomy/reconstruction from back, radio and chemo and tamox.
I too decided to come off tamox after 2 years.
Could not bare the side effects.My periods had stopped from day1 of chemo I was 44 at the time.
It was a positive receptor cancer.
Now its back...I have a local recurrence in the armpit on same side as previous cancer.
I had the tumor removed Thursday.
Its exactly the same kind of cancer.
Don't know what treatment I have to have yet, haven't got that far.
Do I think that I maybe should have stayed on the tamoxifen? Yes.....I probably should have.
However it still might of come back- that's the point, nobody really knows for sure do they.
I will admit, I didn't see it coming.
The lump was found by a CT scan which I had for something else.
So this is quite a shock.
( I fell down and broke my ankle in 3 places on the way to get the results for the BC as well so I'm completely housebound currently 😢😢) LOL I can't weight bare at all for a further 3 weeks already been off the ankle for 6, so life's tough but gotta keep smiling 🤗🤗
To summarise, I THINK...that I still do not regret coming off the Tamoxifen. I'm pretty strong, but the chemo crucified me.
I think that's enough- I've never been the same since even though I'm outdoorsy, horses etc.
Energy levels have never been the same.
So the Tamoxifen was just too much .
Every joint felt like it was a 90 year olds joint.
Which was bad enough...but for me, I found that I was mentally in a 'fog'...and within days of coming off them I realised just how 'out of it' I'd been.
Plus the weight gain which Ive never lost- over a stone and I hate it.
If my oncologist had said to me there was an 80% chance of no recurrence if I took them, ( not just for 5 years either- he was pushing for 10) I'd of stuck with it..but I was told it was on average 20% to 35% in terms of preventing recurrence and for me that just wasn't high enough to put up with how I felt.
Again...mines back,but nobody would ever know if tamoxifen could have prevented it coming back or not.
I could just as easily be here now with the recurrence, after having taken them for the full five years.
Its effectively exactly the same cancer that never fully went away and has eventually grown back.
Up to now, after a pec scan, I've been told there's no spread at all, however I'm not holding my breath until the biopsy has been done which is currently insitu, as last time it was in the nodes but only 'microscopic'
However saying that, the pec scan is a pretty mean machine and generally detects most cancers even in the absolute earliest stages.
I know it's def not anywhere else in my body so I'm very very lucky.
I'm not having intravenous chemo again.
No way.
That's my personal choice.
I will take my chances.
I never ever want to feel that way ever again in my life.
I'd rather explore holistic options including cannabis oil!!!!!
I would have radiotherapy again if they can offer it again.
But I think, for me, that's it.
However, at the moment I'm second guessing as haven't got that far.
To conclude, every woman has to make the decision that they feel is right for them.
So I would personally support anybody's decision.
Hopefully- I will survive this bastard disease!! 💕

Member

Re: coming off tamoxifen

I had a lumpectomy in 2 places in my right breast almost a  year ago and was on tamoxofin for 8 months.  WIth my oncologists blessing I went off of it about 3 weeks ago.  I am significantly happier, have more energy, am exercising more and have had ZERO hot flashes for about a week now.  I am actually somewhat surprised but am thrilled to be able to sleep through the night and not have to sit at work with a fan on me all day.  Hopefully the 10 pounds I put on will come off too.  

Member

Re: coming off tamoxifen

I came of tamoxifen 29th November 2017 after been on them for 5years. I had to have anti depressants to counter act the tamoxifen. The side effects were awful. Severe mood swings and severe joint pain. 

Im 45 now breaking out in spots, periods have never gone away can be very heavy and painful. Feel really washed out, no energy is this normal thanks 

Member

Re: coming off tamoxifen

hi helena thanks for your message i hope you have a very merry christmas too,this is such a helpful forum im so pleased that i joined it its so so helpful xxx big hug to you helena xxx

Community Champion

Re: coming off tamoxifen

Hi Karen,welcome to the forum .Hope the lower dose helps you.Dealing with the side effects can be very challenging and really affect your quality of life .Fingers cross you feel better soon .
Member

Re: coming off tamoxifen

Hi girls, I had DCIS with micro invasion, lumpectomy and 6 weeks of radiation last July/August. Commenced Tamoxifen 20mg in October 2016 and I’ve just had a 4 week break. I’m 56 and post menapause but almost immediately started to get PMS symptoms and had a very light period lasting 2 days. Just recommenced on a lower 10mg dose as a trial to see if my se’s improve. I have gained around 15 pounds, terrible brain fog, aemotional - no tears at all! Chronic fatigue, insomnia and aches and pains. Have felt like a very old and confused lady trying to hold down a full time scientific career. I’m hoping the new lower dose helps. My onc was happy to try this given the importance of having a reasonably happy existence along with bc prevention.
Community Champion

Re: coming off tamoxifen

littlefairy

 

Great that you have been so reassured by your onc.

 

Enjoy Christmas and you know we are always here when you need help and support, thats the beauty of this forum xxxx

Member

Re: coming off tamoxifen

well i saw the oncologist today and im staying on tamoxifen it was nice to know the anxiety is normal and she said my hormones will be a bit all over the place by 12 weeks on it ,it should settle and the brain fog will settle too,so im going to keep myself protected by staying on it ,and im gonna live my life now ,i seem to have accepted the emotional bit ,just going with the flow it helps just to express your feelings and not feel bad about it when haveing a good cry now and then little fairy  best wishes to all the ladies on here xx

Community Champion

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Member

Re: coming off tamoxifen

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

Member

Re: coming off tamoxifen

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?

Member

Re: coming off tamoxifen

Hi Lisa

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.

I hope this helps,
C

Member

Re: coming off tamoxifen

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

Member

Re: coming off tamoxifen

Hi Lisa

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.

I hope this is of some help to you.

Kind regards

Sam
BCC Facilitator

Member

Re: coming off tamoxifen

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

Member

Re: coming off tamoxifen

I'm really worried now - my breast is sore and my stomache is all bloated. has anyone else come off tamoxifen and had these side effects?

Member

coming off tamoxifen

Hi

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

Lisa x