Tamoxifen

Lozzy 4 months ago

5 replies
485 subscribers
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I've been on Tamoxifen since December 2022. My side effects have been manageable until fairly recently.

I can handle the hot flushes, the mood swings and the brain fog. I can laugh these off and manage to plod on. What I can no longer do is handle the pain. I get cramps in my hands and feet every single day numerous times a day. The pain in my feet when cramping has me in tears. There just seems to be no respite!

I'm now suffering from muscle and joint pain. Walking is now something I can hardly manage. I've gone from walking 10-15k steps daily to now hardly able to even walk from one room to the next. This is causing weight gain too, which in turn, is probably causing more pain in my knees etc

I went to GP last month as I started bleeding heavily out of nowhere. She arranged blood tests, which showed depleted vitamin D and arranged a prescription to take for next 3 months. I know lacking vitamin D can cause joint pain etc, but genuinely feel no difference taking these tablets. If anything, I'd say my symptoms have worsened.

I genuinely feel like I can't go on. I'm only 50, but feel 80. I don't know how much longer I can keep this up. I'm struggling to walk and am in so much pain. I work full time and am frightened I can no longer manage my job.

Can anyone offer help/advice? Do I go to GP? Do I contact the hospital and try and speak to my consultant? I've been "closed" by consultant, but don't think my GP will offer any help. I need to consider coming off Tamoxifen as I can't go on like this.

Sorry for the rant. I know some of you will understand xx

cuffcake2000 4 months ago

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

Sabrina22 4 months ago

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

Lozzy 4 months ago in reply to cuffcake2000

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

ChocolateChip 4 months ago

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

My Grace is Sufficient 4 months ago

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.

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