Hi nutmeg2
Just a ps. I would only take one make as I agree with others on here there is a difference between makes
Stay safe
1 Like
Hi Nutmeg, I’ve been on Letrozole for just over 2 years. I didn’t have any side affects at first. In recent months I’ve had more joint pain, but not unbearable. I did get tendinitis when I tried pilates, so I stopped that. I’ve occasionally experienced brain fog, not all the time though. I would say I’ve had some minor things compared to some. A friend of mine couldn’t stand being on it. She had more extreme side affects. So I’d agree with what’s already been said. It’s worth trying it. You may find you don’t suffer any I’ll effects, but then again you might. If you do feel you start to have bad affects, then talk to your medical team. It only takes a short time for the side effects to go away after coming off it, so I’ve been told. All the best x
2 Likes
Hi mog2
I was recommended tamoxifen but I see the symptoms can pretty much mirror Letrozole.
I’m glad to see completed your five years and hope you feel well.
It’s great we have this lounge to chat in. We are not alone because of it.
I’ll post my thoughts on tamoxifen as and when I start my five years. I’m 78 and feeling positive xxx
1 Like
I’m supposed to take it as well. It was horrible. Every bone in my body hurt and I experienced the worst fatigue I’ve ever had. I stopped it and within two weeks I was back to normal. He’s prescribed another drug but I’m afraid to take it.
2 Likes
I’m sorry to hear that. What ever you decide I hope all goes well with you xxx
Hi nutmeg2
Although I think great 5 years done it is also quite scary as it feels Letrozle is my lifeline!
Positivity is a great thing,
1 Like
Thank you for your reply.
It very much seems it’s an individual thing and the only answer is to try it.
Update
I have been recommended to go on tamoxifen. Also something that may or may not be tolerated by well.
All the best x
Thank you.
Six years in August 4 to go . No noticeable side effects walk for miles eat we’ll never miss a tablet . Game changers please take them !
2 Likes
Hi-I have been on Letrozole for almost a year. I have mild hot flushes and occasional night sweats but they are probably my natural menopause symptoms as I had to come off HRT when I was diagnosed. I am 56. I had a few sessions of acupuncture which seemed to help.
No joint pain but I dog walk every day plus exercise as much as I can.
They are a great insurance policy so I recommend them.
2 Likes
Thank you
1 Like
I’ve been on Letrozole since January and only have mild achy hands in the morning which tbh I had a bit when I was on HRT before I was diagnosed so may not be related to Letrozole. Sometimes feel a bit hot overnight but not as bad as menopause hot flushes/night sweats.
As others have said reactions are very individual, hope you find an option without too many side effects.
Thank you
Hi, I have been taking Letrozole for 18months, at the beginning it was a bit miserable, extra hot flushes, skin hair and nails not growing, some joint pain in my hands but I may have had that anyway. But it seems to have really calmed down - I take vitamin D and cod liver oil every day and it has all helped. I am on it for 10years, I am just going along with it and hopefully it will prevent any recurrence of BC not had another bone density scan yet. As another lady posted it’s not all bad news, may be I am lucky! Good luck with whatever you choose sx
1 Like
Thank you x
I have taken it for 4 years since Sec. Br cancer diagnosis and have had no problems, in fact it very quickly ‘disappeared’ a lymph node mass which had developed. Nearly 81 and doing ok. Wishing you all the best.
2 Likes
That’s really heartening to hear. Thank for replying
Hi @nutmeg1
I originally went on letrozole with an injection for 3 months prior to surgery with no effects (granted my mind was quite occupied at that time!).
After surgery I went onto Tamoxifen and I turned into a different person who was not very nice and suicidal most of the time… after speaking with my breast care nurse I have now had a month off to see if that was actually the problem so we are now going to look at something else… what I am trying to say is that although you will be on X for so many years it isn’t fixed in stone and shout up if it doesn’t suit you xxx good luck with it all xxx
1 Like
@nutmeg1 all I would say is get your absolute figures of what benefit it is going to bring you. So not just a 20% reduction in risk for instance.
Some side effects are irreversible like osteoporosis so it pays to be fully informed to be able to make your decision. Someone on another group I’m on didn’t query it until she was three years down the line and suffering terribly and then she was told it was actually less than half a percent benefit!
So if your risk of recurrence is 20% and this will bring it down by 20% i.e. by 4% you may feel it’s worth it. If your risk of recurrence is only 5% for example then in this example it would only bring it down by 1%.
Some want to throw anything and everything at it and others value quality of life more. My benefit was only 0.5% so I declined
1 Like
I would agree with Tigress’ very sensible advice, and she’s right we post on the forum when things go wrong or we’re worried. I have been on Anastrazole for nearly a year and I was horrified by the list of side effects for that, but I have tolerated it well with no side effects. I am about to be changed on to Letrozole, so Im hoping that will be OK too. Maybe give it a try, but know that you don’t have to ‘suffer in silence’ there are alternatives, keep in touch with your oncology team or speak to one of the nurse specialists at MacMillan or Breast Cancer Now. I hope all goes well, Trying to wade through all the info they give you and make choices is daunting and exhausting. Take care
1 Like