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
- As my oncologist said...a leap of faith
Previous large trials. Over what period of time? Define 'large' It would be even more interesting to find out who funded those trials. Who has the money for that? Ummm, let's have guess. The funding of drug trials is a deep and murky issue. The companies who want them approved seem to be tasked with demonstrating they are fit for purpose which sounds reasonable until you consider things like thalidomide.
I'm also guessing that the people who ran the large trial were not the ones reporting a 30%-70% early drop out rate. Define early, what does that mean? 1 year? 5 years? Who is reporting these drop outs? I'm betting it wouldn't be my oncologist if I choose to stop. Speculation is pointless, but let's assume those figures are correct, there would be a large number of people who persist with treatment despite suffering significant side effects.
The choice is clear, take the drug or don't take the drug. That the information about the product is confusing and inconsistent doesn't change the fact that it is currently (apparently) the best chance many people have of surviving the disease. Very frustrating, but it all comes down to your personal motivation--how much you are willing to put up with to achieve a poorly defined result.
- Yep the cough from a cold can stay with me for up to 3 months. Touch wood I am fine atm. I have proper arthritis in my right thumb and damn it burns sometimes but I have found a cream called Pain away really works almost instantly.
- @kmakm would it be worth trying some thermolactyl gloves ? Racking my brains trying to help -loathe winter was 2 overnight up here and some of the washing still damp despite being left in front of the fire.Aching for a warm windy day to wash my sheets and towels - best smell in the world to go to sleep with naturally dried washing.
- @kmakm I've been taking it since 31/7
Colds seem to be the in thing , mine started with a sore throat the night of the FOW , horrid cough won't go away !!
hope you feel better soon @sister - @Sister Funny eh?! I took it to mean that studies had found both results. This study was focusing on seeing if they could find early predictors of quitting so as to support those patients to keep going. They found that the main one was arthralgia. If you developed it quickly when taking an AI, you were more likely to quit.
- So the study found that there's no major life affecting side effects but 30% stopped taking them because of major life affecting side effects????
I had aching legs yesterday but I'm choosing to believe that it's due to fluid retention and this bloody cold I've come down with - at least until proven otherwise.
Bring on the warm weather. - It might not @tigerbeth! Some people sail through untroubled. I'll keep my fingers crossed you fall into that category. How.long have you been taking it now?
- @Kmakm sorry to hear your in such pain Kate it's horrible !
Ive had thumb pain for years , glucosamine helped but it took a good 6 weeks for it to kick in , also anti -inflamitrys helped a lot too .
The cold weather always makes them ache more .
Asked hubby to cut my hands off one day as I was in so much pain , he just looked at me as if I'd gone crazy !! It hurt that much !
Wating for the the letrozole to kick in & make my life worse !! - Not stopping @Romla, not stopping. 6° outside now with a top of 13° tomorrow. Sunny and 18° on Friday though, looking forward to that.
I couldn't do thermals. Our house is toasty warm to start with, and with my hot flushes, thermals would be unbearable...
