Just looking for info from anyone who is post menopausal but has swapped from Letrozole to Tamoxifen.
I have severe joint pains and vaginal dryness which is not helped by Replens, Sylk or any of the other products I have tried.
I have been taking Letrozole for 8 months and the side effects are gradually getting worse.
My onc is happy for me to swap to Tamoxifen as I have also now been diagnosed with early stage osteoporosis .
He has left it with me to make the decision but I’m worried that I may not get as much protection from Tamoxifen.
Helena I know you are taking Tamoxifen, do you have any comments? Or any other members who are able to contribute.
Am I worrying unnecessarily?
I spoke to my bcn recently who said the %difference was minimal.
I did have the option to switch to one of the AI drugs, but as I’ve been fine on tamox, I’m happy to stay on it, as are the oncologist & surgeon. I do like that it is protective of bones, so see how you go, it may even be ok for you. If any issues arise, then at least you’ve done all you need to in exploring all the options.
My understanding from the research is, that there is not a lot of difference in outcomes & although the AI’s are technically more effective, there isn’t any significant differences in overall survival rates.
Thank you for your reply Ann, that’s reassuring
Thanks for providing the link Kathy. It provides interesting reading. I’m speaking with my bcn tomorrow for advice.
Hi Andi . I too am struggling with decisions about hormone treatment. My cancer was 28mm, grade 2, er+ 5/8 And her2+. I finished chemo in Jan, had mastectomy in Feb and started letrozole in April. I had a complete response to chemo and the cancer had gone. I am 51. After a few days on Letrozole I could hardly walk the leg pains were so bad but then they settled and I seemed ok although still had bone aches & stiffness. In September I developed a sore shoulder on my surgery side and then the other shoulder was the same. I struggled getting dressed, drying myself after a shower, reaching up for anything and even wiping my own bottom. My BCN ordered a bone scan in October and it showed arthritis in both shoulders! It is agony and I am convinced it’s Letrozole related. Anyway the onc nurse told me to have a break to see if things improved. After a week there was no improvement with my shoulders but I suddenly felt like a black cloud had been lifted off me. I though I was feeling down due to sore shoulders but I realised it must have been the letrozole! Five weeks on my shoulders are improv8ng (I think!) But I now have to make the decision to go back on letrozole or try exementase or take nothing. My onc said it’s acceptable to take nothing if it makes life miserable And that is what I am leaning towards. However with being mum to 3 early teens it is a hard decision to make. I too am meeting with my BCN today as she always seems better at helping me to make decisions. I dread the though of recurrence but I also dread the thought of going back on Letrozole and suffering it’s effects!!
Thanks for your comments Ali. The decision is tough and the more I research, the more I am uncertain.
I am nearly 63 so a good decade older than you.
I’ve spoken to my bcn today and she is fully supportive of a change to Tamoxifen as I am classed as low risk. She is arranging an appointment with my oncologist for the New Year and has suggested stopping Letrozole from next week to allow the drug to be washed out of my system.
Everything feels like a scary option.
I’m quite excited about a pain free Christmas, but also worried about not taking it for 4 weeks!
We had a long discussion about risk factors and quality of life.
Good luck with your decision, has anyone mentioned a change to Tamoxifen or is that not an option for you?
Just a follow on from my 1st post in early December.
Following my hospital consultation I’ve now been advised that it is perfectly acceptable to change to Tamoxifen
Could I ask for a concensus of opinion on favourite brands as I’m guessing the same issues will present as it does with Letrozole.
I’ve heard that Wockhardt is a good one?
Could you let me have your comments please?
Also I’m currently in the "wash out " period off Letrozole which I’m told is 4 - 6 weeks. Feeling quite vulnerable not taking any hormone blockers but have been reassured this is perfectly fine.
How long have other ladies had for the wash out period when changing meds?
Thanks in advance for your contributions
Thanks Michelle I’ve also heard that Teva is a good one x