Forum Discussion
Early Days on Letrozole
So, I started taking Letrozole on the 1/6/18.
My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time.
Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray!
Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat!
I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps.
I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on!
Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know.
My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well!
My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xox
My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time.
Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray!
Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat!
I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps.
I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on!
Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know.
My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well!
My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xox
373 Replies
- Just asked the pharmacist at Peter Mac and he said that theoretically the brand should not make any difference however many patients report that it does. Mystery remains and I will definitely try a different brand when my reprieve is over.
- Please rememberregardless of fillers Letrozole does have side effects that we will probably have all/ some but maybe a change of brand / filler would be just enough to make thinks bearable.
- Reproduced here in case it helps
Found this on a UK site called MacMillan about Letrozole brands in UKI've just started on letrozole a month ago on Sun brand and after reading all the experience of ladies on here, I tried to check exactly what the differences are between the various brands. It is possible to check the detailed ingredients (active (letrozole) and inactive/excipients) by looking at the 'summary of product characteristics' which is available from the manufacturers and what is held by the licensing authority.
There are a couple of key points;
1.Cipla and Teva both contain tartrazine, but the others don't. Others use iron oxide yellow for colouring. Cipla also has iron oxide red as well as iron oxide yellow. None of the others do. These two brands are the most different from Femara original.
2. Sandoz and Femara (Novartis) look identical across all ingredients.
3. Accord and Zentiva are essentially identical to Sandoz.
4. Sun Pharma is almost the same as Sandoz except for Sun contains PEG (water soluble binder ) and povidone ( a water soluble stabiliser) . Both these are very common stable additives, non-toxic, without any particular SEs
5. Actavis is almost the same as Sandoz except it contains polyvinyl alcohol - a water soluble, stable, commonly used non-toxic additive in the coating.
Cipla brand in UK has many complaints - Sandoz appears popular .
- Happy Birthday @kezmusc! Or have I already said it? I'm so confused...
- Thanks @kezmusc. And happy birthday! I hope you had an enjoyable celebration
Re the Letrozole side effects, I can't credit it. My luck is just shocking. I had hoped so much that I would get off lightly. Not to be. I must have done something horrendous in a previous life! It was a struggle making the kids lunches this morning my hands were so stiff. And tonight I was at my godfather's 80th and in a room full of senior citizens I was the slowest out of the chair for the toast because of the pain and stiffness in my coccyx. I'm very self-conscious about it.
The list of side effects for Letrozole is a long one. I counted them, it's 60. I certainly don't have all of them. But I have enough and I don't want more.
I loathe the worst of hot flushes. The nausea, the sweat, the needle pricks that now extend from my fingers to past my elbows. Not to mention the heat. Dress in layers my arse...
Thanks for your thoughts lovey. I hope it all eases up soon. K xox - @kezmusc yep the dress in layers thing is right up there with being told 'get some exercise, it'll make you feel better' when you can barely crawl out of bed to go pee!
Soon as I stopped taking the Letrozole this week it was like a lights came back on in my brain, and the river of sweat and tears dried up overnight.
I will give it my best shot when it comes to trying again with this god awful stuff but I have a horrible feeling I'm going to be one of the 50 per cent that just can't do it. - Hey @kmakm ,
I've just been catching up with some of your posts. Had a huge weekend (my birthday) and two days of training at work. Yuk!
Sorry your copping a lot of the side effects. It is incredibly depressing and I completely understand how you feel. There are only two choices I guess and that's the sucky thing. Rock, hard place and a whole lot of confusion about what to do. The thought of staying in this hazy cloud of limbo for so long is not particularly appealing and really plays mind games with you.
The list of possible side effects for most of these drugs is not extensive and the how to manage them is pretty basic. "Just remember dear, if you have hot flushes dress in layers" OMG.
I have yet to see anything that says hot flushes may make you dizzy, light headed, throw up, cry and sweat like a pig all at the same time. Think that one got left out!
A lot of the research studies are old or very small and information is quite conflicting sometimes. They take ages to plow through and by the end of it you realise it wasn't worth your time reading. And you probably have forgotten what it said LOL.
Regarding the drop out rate of people taking HT I have heard a lot of these stats come from the pharmacy reporting as to the amount of scripts filled/unfilled. Not very reliable I guess as people could change meds, just put up with it etc etc. I had a chat with the BC nurses about this not too long ago. The reckoned it was more like 50/50 from what they see.
I have found the only thing that knocks the pain a bit is ibuprofen (and we don't want to be taking heaps of that) and it only lasts a couple of hours.
Mersyndol is still my go to when it's bad at night. Helps with the sleep as well. Can't take that every day either grr.
Hoping you start feeling better in the not too distant future.
xoxoxoxo - @kmakm Indeed. You hang in there and much hugs xxx
- That's good news @Vangirl. One thing at a time eh?
Nah, still feel like rubbish. I did go for my 5km walk though. I've decided to take a valium now. I feel so distressed it's ridiculous. I can't understand it. I took some panadol osteo for the ankle pain but it's done virtually nothing. - @kmakm hope you feel a little better after your snooze xx
