I have the chance of changing from Letrozole to Tamoxifen, does anyone take these tablets and if so, have you had really bad side effects, as I have read that people get blurred vision and they have really bad bone problems with them?
I have been on Tamoxifen for nearly 7 months. The worst for me are the hot flushes, which are worse at night (I take my tablet first thing in the morning). Sleep is a little hit and miss. I’m 52 and was having mild menopausal symptoms anyway and this feels like it’s just accentuating them. I have a few bladder issues which are worse than they were before and a permanent runny nose. Other than that things seem to be settling down. My eyesight seems to be the same as it was before and no bone issues. My Onco said that I could try other tablets but he felt Tamoxibollox was gentler.
Don't know if that helps. I think we might all react differently anyway. I take Teva brand. Different brands might also have different side effects.
Thanks for your help Letrozole which I am on has made my hair thin that much that my scalp is showing now , I have been on them for nearly 2 years and this has only happened in the last 6 months.
I have not been finding Tamoxifen to be too bad. Admittedly I have the full Bingo card of menapausal symptoms but not all at once and not too badly. In the first 3 weeks I was quite worried - particularly by mood swings but quite a lot of what bothered me at that point isnt bothering me a month later. There have been some things which have really helped: keeping my blood sugar stable by eating smaller more frequent meals has been a game changer for me. I was getting very hangry as the kids say.
I have learnt to have hot drinks a bit less hot to diminish the hot flushes and I'm going to bed an hour earlier to offset the night wakings but they are not all month - some if the time my sleep is ok.
I think Tamoxifen is worth a try and for a few months. For all the people who have a horrid time with it I think there are a lot more who are quietly fine with it. Xx
I am quietly fine with Tamoxifen!! Been on them for 4 months had two different brands and have noticed no changes. I have always slept well and still do, have no extra aches and pains and generally feel ok. I take mine at night, which may or may not matter.
Sorry to hear about your hair loss. Just what you don’t need! I think Tamoxifen is kinder on your bones, joints & hair generally. They give Letrozole because it’s slightly more effective, but the difference isn’t that big. Definitely worth a try. I did have some hair loss on tamoxifen, but it’s hard to know what’s due to the drugs, the difference in your hormones or the after effects of chemo. It’s definitely thinner than before but scalp not visible. Lots of luck x
I have an appointment with the Oncologist in 3 weeks time so i can talk to him and see if Tamoxifan will be alright for me, at the moment I put hair fibres on to cover the patch up xx
Has anyone had a bad reaction to one brand of Tamoxifen? I started on Wockhardt which was terrible with bad pelvic pain, hot flushes etc. I then moved to Teva which has been much better. I still get hot flushes but they are not as pronounced. Now my pharmacy says they can’t get Teva, so sent me Relonchem, so I having to adapt yet again. Does anyone else experience inability to get the Teva brand!
Unfortunately it’s a regular thing with Teva in my experience & generally only lasts a few weeks. Worst case a month or two in the 5 years i have been taking it. Sometimes you can take your prescription back & go round all the pharmacies. Generally if one hasn't got it, the others don't either. Whoever runs production at Teva needs to look at what they’re doing.
What l have done to counter it is to collect my prescription a couple of weeks early on several occasions, so i still have 6 weeks supply when i order a refill. If they’re out, then i’m covered. I have also taken half a tablet for a few days to eek out my supply & there is research showing lower doses are also effective. I did not get on with the relonchem brand at all, but you may be different. Good luck!
Thanks so much for your prompt response and helpful advice. I can’t face trudging round all the local pharmacies, so I’ll try to order early though I did try this not so long ago. This wasn’t processed on time because I gather everyone was trying to do it to stock up when they thought we would leave the EU on 29 March. The complications!
I’m sorry to hear relonchem didn’t suit you. So far I haven’t had really bad reactions though they are more pronounced then with Teva. Wockhardt was the one which has given me the worst. And the GPs think we are imagining it as the formula is the same in all cases! I’ve done some research and see that it is the “excipients” or additives, like fillers and binders that make the difference, as they are all made in different countries.
Are you still on it or is your five years up? Some women are apparently on it for 10 years but I haven’t understood why this is, as my consultant told me that it has a tendency to stop working after a few years, so she is only recommending five years.
