Severe side affects from Tamoxifen

Im struggling to see an end it sight - has anyone got any advice to cope with side affects or even any complementary therapies which help x

Hi, I'm trying to work out how to use this site, not user friendly. Anyway, so sorry to hear you are having a hard time with treatment and would like to keep in touch as I have just been diagnosed with grade 2 breast cancer and getting op on the 10th June, suggested radiotherapy and Letrozole. I was worried about treatment, they say everyone is different, but I am interested to read how you get on.  I do hope you get better soon, contact your MacMillan nurse for help asap as it sounds as if you could do with help and advice.  Isy x

Aaaw so lovely to hear from you Isy x so sorry to hear you have been diagnosed with Breast Cancer too - my heart goes out to you and the family. Please stay in touch - if you need any support.

But i dont want you to worry re experiencing side affects like myself. Concentrate on you lovely. After my op whilst it had its issues... i was doing ok and found recovery was quicker than i expected. I even contemplated going back to work after Radiotherapy...but i was unfortunate that things went the way they have done. But we live in hope and try to get through the difficult days xx

I have experienced all of what you have mentioned I have been on Tamoxifen for just over a year now ( I had breast cancer 2 surgeries and radiotherapy) I have learned to live with the side effects but some days it is really difficult. I would definitely recommend that you talk to your nurse mine have been so good and will be able to give you the right advice . Sending positive thoughts and hope you get better soon x

Hiya, 

when I started radiotherapy in December, I’d been taking tamoxifen for 3 months. Radiotherapy (or so I thought) also made me very nauseous and headaches, my consultant said it’s very uncommon side effects but nevertheless gave me anti sickness meds etc. 
But... coincidentally, I’d started taking a different brand of tamoxifen (the chemist just sent me randomly) just before radiotherapy and wondered if that was causing the horrid side effects rather than the radio! So anyway I asked the chemist to switch back to the original brand of tamoxifen, and have (touch wood!) been fine since (apart from hot flushes at night, but they’re totally manageable.) 

sorry for long reply, but might be worth trying a different brand of tamoxifen? Don’t suffer, my lovely, there’s options out there for you I hope. 

take care xxx

Hi 

I struggled with letrazole with bad side effects. Now on exesmestane which isn’t as bad

Hi Jane

Thank you for your reply. Really helps knowing that I'm not the only 1 who understands about the horrible side effects - but also not nice hearing others are suffering too : (

My breast care nurse has been really supportive and I also saw my oncologist on Tuesday. I stopped the Tamoxifen on Tues. But it is very much trial and error from what I can see, to find the right meds with the least side effects. Sending you strength and caring wishes xx

Hi Dawn

Thank you for your reply. Its crazy isnt it - as you really arent prepared for these side effects...which knock you for 6! I had been taken Tamoxifen since the 15th March and R started on the 19th April. Up until that point Tamoxifen side effects were managable and only hot flushes at night. I wasnt getting any of the nausea and other side effects - till when I started R. Theres been no respite since then.

My team are great and are trying to figure out how best to manage my treatment and side effects. Send you big care bear hugs xx

Aaaw bless you - how you feeling now? Trying to get my head around me initially thinking I could just go back to normal e.g. work etc - straight after Radiotherapy. I really wasnt expecting debilatating side effects from Tamoxifen xx

I have been on the same brand since starting Tamoxifen. But maybe like you say re changing brands - may resolve the issue x