Tamoxifen

Hi Lozzy, I have been on tamoxifen for just on a year now. I also suffer with more cramping and wrist and neck pain first thing in the morning. It does wear off during the day. I drink tonic water which I find helpful for the cramps plus eating bananas. I have also switched manufacturers of tamoxifen and found that does appear to make a difference. Workhardt and Mylan seem to be the two that work for me. You could also speak with your breast care nurse or try and get hold of your oncologist and see if maybe switching to another type of medication would help. 
Wishing you all the best

Hugs from cuffcake x x x x x

The breast cancer care nurse can liaise with them for you. I am on Tamoxifen for the last year too. It does affect many things. I am trying to keep dancing but I do run out of breath and have to stop at times. I think you need a change. I started on Letrozole which made my knee so painful. Xxxx

Thanks for the reply. Unfortunately I detest bananas and tonic water  I've had to stick to one brand of tamoxifen as the side effects of the others were awful.  Tears, paranoia, sweats etc. Suppose I need to weigh up what is worse symptom wise! Think I will try and get a hold of one of the nurses on Monday xx

Yes I agree with others here, do speak to your breast care nurse. I have refused Tamoxifen as I am more bothered by side effects than cancer returning....but I am 73. My breast care nurse wanted me to take it and was most supportive of me, I am 73 and still choose not to.  But for you I feel sure they will help and advise re your pain. Good luck

Hi, sorry you have got to this stage with side effects.  I am on Anastrozole and am suffering with pain too.  My gp put me on Duloxetine which is an antidepressant but stops pain signals going to your brain.  You start out with  30mg and I’m now on 120mg per day.  I am 62 but feel 90.  I can’t cope with work or daily activities.  My sweats are worse at the minute but I’m putting it down to the heat at the minute and some work issues I’m going through.  Cramps can be helped by taking more salt probably why the tonic water works.  

Hi Lozzy, I was just searching through the posts and was wondering if you'd managed to get any help?  I've been on Tamoxifen for four years now, I am supposed to be on tablets for ten years but am considering stopping them and just relying on an annual check.  last year was the major hot flushes, I would go and stand in the garden in the freezing weather and was not getting a lot of sleep, that's passed but now it's exhaustion and aches.  I have 2 german shepherds so have always walked 2 hours a day but i'm struggling.  I have a very demanding family life with a 13 year old with mental health issues.  I am starting to think I would rather take the gamble and feel healthier ?

Hi

Well where do I begin?! I've been off T for about 5 months now. Initially stopped due to bleeding and joint pain. Had to get a hysterescopy and biopsy due to bleeding and was suggested I stay off T til I get results. Because of catching covid (again!!) My op was postponed.  My biopsy came back clear approx 3 wks ago. In between times, I went back to oncologist who advised there was only a 3% benefit of me going back on T. I've now got the decision to make on whether to restart or not. My joint pain hasn't eased one bit!! GP thinks I have fibromyalgia and long covid , which may be causing the joint pain. Being off T has helped me sleep a bit better and has stopped the flushes....sadly, heavy bleeding now back, so clearly not menopausal after all either!