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coming off tamoxifen

47 REPLIES
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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