Another Tamoxifen question.....

Hi

I'm not a member of this group so can't answer your question but I noticed that your post hadn't had any replies. By replying to you it will bump it back to the top of the page where hopefully someone with the right knowledge will see it and respond.

If you don't get any replies then I'd suggest that the best person to ask is your breast cancer nurse. You could also post your question in ask a nurse and one of the specialist cancer nurses will respond within 2 working days.

x

Hi latchbrook, thanks for response. I most post the query to ask a nurse in the first instance and go from there.

I hope all is as well as can be with you, have a good night xx

Hi,

im on Tamoxifen and the only time I have stopped it was when I was traveling through time zones and did not want to overdose myself! I think it’s wise to discuss any changes with medics. I guess als weighing up factors of why you want to stop it versus why you’re taking it. Other than overdose possibilities tamoxifen hasn’t got in the way of anything I’ve wanted to do, even though I do experiece it’s side effects. I would be interested in the feedback you get from Macmillan team. So lease keep me posted. Take good care of yourself  

 I’ve got no idea why those hearts appeared in the text!!

Hi

I would echo others’ comments about checking with the professionals before stopping but also wonder if you might have an easier time of it on a different brand. I was getting on okbwith Teva brand brand but then with work stress, the night sweats and waking became unbearable. Coincidentally I was given a different brand (Mylan) and wished I’d switched sooner as the side effects are definitely less. I’ve seen on here that Teva aren’t producing the tablets anymore so hope I can carry on with Mylan.

Hope you get yourself sorted out and take care.

Liz x

Thanks Israel and Virgo. 

I had wondered about the different brands having different effects. I’ve kept a record of the ones I e had so far (only 2 types, Wockhardt and now actavis). 

I suffered awful joint and bone and muscle pain, worst during the night but have managed to overcome that with exercise every morning 20 to 40 minutes depending on how late waking up I am!!). The exercise I do is a combo of  yoga, Pilates, Callanetics and general exercise we used to do before swimming training (40 years ago! ). I feel considerably better for it however the disheartening aspect is 4 months in to the regime, I’ve had absolutely no weight loss, muscle tone or definition and stamina yet. Bummer!

I do face yoga every morning before I exercise as it actually wakes me up enough to function! Amazing.

however, the issues that will not go away with diet and exercise include exacerbated acid reflux, nausea, headaches, fatigue, lower back pain, disorientation/brain drain,dizziness, insomnia, loss of balance etc.feet and ankles always feel swollen and sore, even when they are not swollen! Weird.  And the stomach bloat and pain! Awful! No idea if any of this is normal, but I don’t like it 

The Macmillan nurse who responded advised speaking to professionals before stopping anything (which I definitely would do), that they could possibly try alternative treatment. Said not enough known about effects if breaks are taken, in addition it would still be in your system if you stop for a few weeks. 

So best action I guess is get an appointment with the consultant and see what they can offer by way of support etc. 

enough whinging ....  Life ain’t that bad compared to what it would have been by now if it hadn’t been found and treated!

take care all, have a peaceful night xxxxx

Hey there, below is response from MacMillan nurse .... hope it is of help xx

Many people find the side effects of hormone therapy drugs difficult to cope with. If it’s the side effects that are putting you off, it’s always important to talk with your consultant or clinical nurse specialist before making any decisions to have a break, as there may be ways to improve symptoms or your consultant may suggest that you change to a different drug.

If you have persistent side effects from taking tamoxifen, tell your specialist team so that they can decide how best to manage them.

It’s important to know that if you stop your treatmentfor 6 weeks, the likelihood is that some of the drug will still be in your system and continue to work.

It’s not entirely clear what the impact of a break in hormone therapy would mean. This is because breaks don’t tend to be routine and therefore it’s difficult to measure the long-term impact in studies.