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?
Glad you’re not finding relon too bad. I was told 10 years, probably life right from the start. I think the research (funded by the drug co of course...what conflict of interest???) was just out at the time supporting a longer period. I am being treated at the Marsden, so that’s their approach. I guess it varies, as does everything else. I have read research saying the side effects become more common if you take it for longer, so not overly keen on taking it indefinitely personally.
Well The Marsden is the leader in cancer treatment and from what I’ve read they rely on the latest research so their advice must be good. I’m down in Surrey and haven’t been overly impressed with the treatment I’ve received. I felt like a factory product on a conveyor belt if I’m honest. They didn’t want to listen and I did wonder whether budgets were dictating the approach.
Good luck with your treatment. You are clearly in good hands and thanks so much for your advice
I have been taking Tamoxifen for about a year now, it’s been Relonchem since the start and I find it OK. I get the hot flashes and night sweats are worse but that’s it. No aches or pains so far. My understanding is I’ll be on it for 10 years
Thanks so much for your feedback. It’s reassuring that you can manage being on Relonchem. I’d really like to understand why some of us are on 10 years and others like me on 5 years. I think I’ll give the Macmillan nurses a call.
I’m on Teva. Been on tamoxifen for 10 months. I had quite bad aching joints but no other side effects so thought this was a good thing. I found a fantastic joint supplement which has made all the difference. Like almost back to normal.
However I also experienced the supply problem when I tried to renew my prescription last month. Pharmacy told me Teva had stopped doing the 20mg. They normally stock Relonchem but were happy to order Teva for me. But suddenly no choice. Tried the Reloonchem and had hot flushes. Was worried this would affect my sleep which is sacrosanct for me. Pharmacy advised Teva still doing the 10mg tabs but GP would need to change prescription. So back on Teva and just take 2 tabs.
I’m interested to hear that the supply thing is intermittent with Teva so I’ll be sure to check this with the pharmacist. She gave me the impression it was a permanent thing.
Oncologist told me I’d be on Tamoxifen for 5 years by which time I’d be deemed post menopausal so would then go onto letrozole for next 5. Was 50 and pre menopause (monthly periods) when diagnosed but at my age the chemo will shut down your ovaries, putting you into a very quick menopause. So all depends on your age and menstrual status.
Thanks so much for your update. I am really interested to hear that Teva has stopped doing the 20 mg. I guess that’s why my pharmacy can’t source it any more but I’ll ask them about the 10 mg size. I’m also interested to hear about the joint supplement that you take. I think quite a lot of us would find that helpful.
I’ve heard from others that acupuncture can be really helpful to reduce the impact of hot flushes. You may be able to get a course free if you have a cancer treatment centre near you offering alternative therapies.
I’m postmenopausal but have osteoporosis so can’t Letrozole, hence the Tamoxifen prescription. But I’d still like to know why only for five years. I just hope this isn’t an age or a budget thing.
I've tried a lot of different joint supplements over the last 10 months. I do take Omega 3 fish oil and have tried a variety of rosehip extract, cherry extract, glucosamine, etc. The one that worked best for me has been 'Seven Seas JointCare Supplex & Turmeric' It's 2 different tablets in the pack and contains glucosamine and turmeric. I'd tried a generic glucosamine tablet before but it didn't seem to make much difference, compared to this. Perhaps one man's meat is another man's poison but this is what worked well for me. Obviously, not to fall foul of any community regs on here, there are other supplement brands available. It may well be the mix of glucosamine, omega 3 and turmeric in whatever form that helps.
I don't get hot flushes, thank god. I am a massive fan of acupuncture anyway. It totally got rid of the pain of 2 frozen shoulders over the past year. And my acupuncturist was just a gem, who really supported me in recovering from my treatment in general, especially the chemo.
I didn't know that about letrozole and osteoporosis. Is there anyone you can ask about the tamoxifen only being for 5 years? Just today, I got an out-of-the-blue appointment for a follow up with my oncologist, which I wasn't expecting. But I know our BCNs say you can still call them with treatment type questions.
