Hi everyone 

Im so so glad I found this post, I feel like I've been going mad the past few weeks. 
I stopped taking tamoxifen on 29Jan21 after being on it for just over 4 years and I've been feeling completely out of sorts and I couldn't find any answers as to whether it was cause I stopped tamoxifen or not, I spoke with one of the breast care nurses who said she hadn't heard of any side effects when coming off tamoxifen so I thought I was going mad, but luckily I've found this post and other ladies that have experienced what I'm feeling & I feel like a weight ha been lifted.  
Some of the things I'm experiencing are ....very emotional, crying at absolutely nothing, my body is aching especially my lower abdomen & back. My left breast where I had the lumpectomy is aching and I feel miserable and really tired all the time.  
Are any of you feeling the same and how long does this last?? My poor husband doesn't know what to do  bless him. 

Hi everyone

I'm 65 and came off of tamoxifen 6 weeks ago after taking it for 13yrs. I had no side effects whilst taking it but since stopping I have felt generally unwell, suffering from joint pain, fatigue and blurred vision.The problem is I started taking medication for type 2 diabetes the same week I stopped the tamoxifen and I'm unsure which is causing me the problems. I have decided to give it 3 months, to allow the tamoxifen to leave my body and the new tablets to settle before seeking advice from my gp. I feel like I've aged 20 yrs in the last few weeks and it's making me pretty miserable. The lockdown situation isn't helping, not being able to go out and about means i've had a lot more time to think about how unwell I feel. I'm just hoping things improve with time.

Hi, I am coming to the end of 10 years on tamoxifen, having had breast cancer in 2010. I've had night flushes, which improved overtime but no other side effects while I took it. Having read the previous posts I feel quite nervous about coming off it. 
 

Did anyone stop taking it gradually or did you just stop? And has anyone that's had these side effects of withdrawal come through  the other side. It would be good to have some idea of a timescale. 
 

We've all come a long way, well done everyone and I hope that you all feel better soon. Xx

I was advised to stop taking tamoxifen in February 2021 but I  feel quite nervous about stopping.  I feel it has protected me for 10 years.  I still have some left so I haven't actually stopped yet but decided today that I had taken the last one.

Not had any real issues whilst taking tamoxifen but feel unsettled about finishing it altogether.

is it normal to feel like this?

it certainly has been a journey for us all, let's hope for a better 10 years ahead!

Hi Sogno, 

yes I know how you feel. I think I felt the same when my hospital checks ended after 5 years. I have arranged a telephone chat with my GP to discuss how to finish. It's the final step on our journey! 
 

I hope that it goes well for you. I guess if we do experience withdrawal side effects to contact our GP to see if anything can be done to help us through. 
 

Wishing you well. X

Thanks so much

Good luck and I'll post again to give update on coming off tamoxifen x

Yes please do. I'll do the same. 
 

Take care x

Hi. I have just found this thread after searching about coming off of tamoxifen & wondered how you were getting on now?

I have been on tamoxifen for almost 10 years & have had a few side effects but feel this is a small price to pay for the protection & peace of mind. 
 

My oncologist advised me to stop taking the tablets in Oct 22, which will be 10 years. He said to just stop & I will be fine, no side effects. I was already worried about stopping them as they are a security blanket but I am even more nervous after reading some of the comments on here about so feeling poorly after. 
 

Can I ask how you are getting on & how you have been since coming off? 
 

Thanks x

Hi. I have just found this thread after searching about coming off of tamoxifen & wondered how you were getting on now?

I have been on tamoxifen for almost 10 years & have had a few side effects but feel this is a small price to pay for the protection & peace of mind. 
 

My oncologist advised me to stop taking the tablets in Oct 22, which will be 10 years. He said to just stop & I will be fine, no side effects. I was already worried about stopping them as they are a security blanket but I am even more nervous after reading some of the comments on here about so feeling poorly after. 
 

Can I ask how you are getting on & how you have been since coming off? 
 

Thanks x

Hi, it's been nearly a year now and I'm doing really well. I didn't get the awful side effects that I'd read about on this thread, for which I'm very grateful. I've had more achy joints this past year but think this is just normal. I am approaching 60 and there's a lot of arthritis in my family. I've made a concerted effort to lose weight and managed 1.5 stone. Though I have out on a few pounds over Christmas. But I try to eat a healthy diet and walk regularly. As I get older and especially now I'm not taking any medication,  I feel more of a responsibility to look after my health as best as I can. 
 

If you do have any side effects don't be Afraid  to go back to your GP.  Don't focus too much on other peoples experience as it is different for everyone. I hope it all goes well for you and you continue to have good health.  

Thank you so much for taking the time to reply.

I am so happy you are doing so well & that you didn't get any of the withdrawal symptoms others have mentioned, it has made me feel a bit better. I think adjusting my diet will be good & I will try to remain active then hopefully I will be fine.

All the best for 2022.

Karen

Hi 

I've just been advised (by text!) to come off it after 12 years. I've arranged to discuss with my consultant next week, but I feel quite nervous about losing the protection after so long. And I didn't think there might be side effects either. 
 

x

Thank you for this post, it is good advice x 

Wow I can't believe you have been told by text, that is terrible. I didn't know you could be on it longer than 10 years. I was initially told 5 years & then they said another 5 which I was quite happy with. I hope the telephone consultation helps put your mind at rest.

I haven't seen my Oncologist since before lockdown but we still have our annual appointment by telephone. He told me to just stop taking Tamoxifen in October this year. He knows I am worried but there doesn't seem to be any help 10 years post operation for these types of concerns. Like you I feel protected whilst taking it. I try not to worry & tell myself that I am a big girl & that I will be fine but......

I found a couple of threads on here where people were saying they were experiencing problems after coming off Tamoxifen, this was not what my Oncologist said so I thought I would message one of the ladies who said they had just come off it. I am so grateful to bluebellz for her reply.

I would be interested to know what your consultant said, if you can find the time to reply. 

Keep well x

The text came from the GP, who has been in contact with the breast clinic, but I would like a little more information! I suspect I fell through the net during lockdown, which is why it has extended to 12 years, and I didn't chase because I wasn't sure I wanted to come off it. It's complex isn't it, part of me wants to, part doesn't. Hmmm. Will report back once I have spoken to consultant xx

Dear Kazma

tamoxifen gave me the typical aged 40 years overnight/ couldn't stop crying/ hourly hot flushes when I started. Tearyness went off after a month but I gained 2 stones the first year. Nobody told me to but I just stopped ordering repeats after ten years in 2018, was expecting to feel some difference but not a thing. Good news, I lost a stone, bad news I had hoped the hot flushes would end but they are still every hour

Dear Gardengirl, it's really nice to hear you have been fine. I am hoping my experience will be the same. I have also put on 2 stone since being on Tamoxifen. I always try to eat healthy & was regularly exercising during lockdown. I didn't really lose any weight but I toned up. I had to stop around 4 months ago as I injured my neck, not sure how and am now seeing an Osteopath. I haven't put any weight on in the last 4 months but have gone a bit flabby  Fingers crossed I will lose some weight when I stop taking the tablets in October. 
The hot flushes seem to bother me the most through the night. I have forgotten what it's like to have a good nights sleep. And just recently I feel so emotional. Have things improved for you? 

Hi.  I am so glad I have found this thread! I've been searching the net for help with post tamoxifen side effects and have found nothing! I stopped tamoxifen this Jan after being on it for 10 years. I was fine for a little while and then one day out of the blue it was like I had reverted to life before cancer with the most horrendous mood swings! I became so low, I hated myself, I wanted to die etc... everything I used to feel every month my period was due.  It was awful! Then i had the worst period I've ever had! Bear in mind that my periods stopped for 11 months (I am 47 and menopausal) This period lasted a whole month!! I felt drained.  Now I am suffering with the worst breast pain I have ever had.  Its in both and not just the affected one, which gives me nerve pain every day anyway! It's really starting to get me down.  Taking my bra off used to be the best feeling, but now it almost makes me cry.  
 

Is anyone else having this awful breast pain? And what are you doing to help alleviate it?

thank you xx

Hi Vik,

I am due to stop Tamoxifen in October this year & am hoping that I don't suffer with any adverse side effects. 
Im sorry to hear you are now suffering. Have you spoke to your GP? Not sure where you are but I know it is almost impossible to speak to a GP at the moment in Essex.
I have been looking for advice regarding coming off Tamoxifen after 10 years but there seems to be very little. It is a real shame that there isn't some form of help, be it online, to offer advice & reassurance to those of us that need it. I feel like my Oncologist has said "well that's it, your 10years are up so off you go" Forgotten

I hope someone can help with advice x