I have been taking Letrozole for 2 1/2 years my mobility has deteriorated so much constant pain in all my bones fed up of it if I stop does anybody know the odds on cancer coming back I can't face another 2 1/2 years on it
I was prescribed Letrozole 2years ago too and tried it for about 3 months. In the end I stopped taking it because I started to gain weight and my joints started hurting. I live a very active life so I didn't want this drug stopping that. I also felt I was getting in low mood but not sure if I made that bit up??!! Anyway I took against taking it and stopped
I DON'T advocate this for others, it's just something that is definitely right for me I feel absolutely brilliant now and life is good.
However I did ask the oncologist if he could tell me the protective factor of letrozole for me and what 'risk' was I taking by not complying with the meds prescribed. He duly worked this out for me on his computer! For me the protective factor was under 2%.. It's different for everyone so I think it would be advisable for you to ask your oncologist to do the same for you. They can easily make this calculation. It will be different for all of us bearing in mind size of tumour, family history and current age etc.
I do hope you get on ok. Hoping things improve for you soon .
It IS worth finding out how much protection Letrozile will offer you. Then you can make an informed decision about whether or not to continue with it.
Just to say I think you may be better to see a nurse at your cancer clinic. They have the better expertise on cancer treatments than your GP. They will also get the info from an oncologist if necessary. I know appts. aren't easily come by but there will almost definitely be a 'drop in' system available where you can talk through this issue with them.
Ive just read your post as I'm taking letrazole as well, and have been on it for mths.ive tried a few brands ,cipia being the worst, and I thought I'd found one that was ok Accord brand.But recently my side effects got worse again ,I have so much pain in the heels of my feet,ecspecialy in the mornings and my shoulder ,legs ,back and hands. I cant walk well in the mornings and feel like I'm 90, I'm actually 64, 65 this November. I'm also getting the odd hot flushes as well now,which I wasn't getting at all before. I have swelling in my right arm and was told it could be lymphedema, so have an appointment for lymphedema clinic to get that checked out in a couple of weeks time. I'm also experiencing pain in my right thumb its clicking and locking up at the joint where the thumb bends,the pain is awful,and I have to push and massage my thumb to get it moving again, this is happening every morning and at night. I did break both my wrists a few years ago and the hand that the thumb is doing this,was broken in four places, and it was set 5mm out of alignment, plus I had a small bone removed from just under the thumb ( scaffold bone) years ago ,because of arthritis. It's also on the right side where they think I have lymphedema, so it could be a combination of all these factors,or it could be the letrazole causing it,I'm not sure.
My question to you is ,as you say you have been on Letrazole for 2 and half years,how many brands did you try,as my breast care nurses are saying I should ask to change brands again, they suggested I tried femarra, if my gp agrees to it ,as its the most expensive brand. They said give it 3 months, and see how you are,you may find it suits you better ,or it may not.They say to keep trying different brands ,untill I find one that agrees with me. I'm just wondering if you did this,and if so did you ever try femarra brand?, did you find any that were better and if so which brands. I know we are all different and what might suit one person, may not suit another,but there are so many different brand's. Of letrazole out there,and you may know of one that i dont.
