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
- @Romla Why would it only be when I have a hot flush and why only sometimes? The TC did get to my hands quite badly but apart from messing up my nails for ages and leaving me with a slight loss of fingertip sensitivity, there have been no other permanent effects.
I saw my oncologist last week and she suggested curcumin for the Letrozole joint pain, she says some of her patients have repoeted success with it. I'll finish my magnesium trial at the end of this month and then move on to curcumin. - I haven’t had that - sounds like peripheral neuropathy but bestget checked in case something else eg cellulitis .
If is PN Curcumin is good - even Michael Mosley takes it.xo - In the last few days I have developed a new Letrozole side effect (it's on the list) and/or menopause symptom. Some hot flushes are now accompanied by a very sharp needle like pain all over my hands and about halfway up my forearms. Like hundreds of nasty pin pricks. It's more than a pins & needles sensation, and is actually quite painful.
Has anyone else had this? Did you find anything that helped? Or is it yet another thing that I have to suck up? :/ - @kmakm no sleeping nude for me either - hubby would love it if I did!
- Hey @kmakm,
Great post lovely. Socks? yep, made me hot too. Even though that was the only thing I had on hehe. I think it got worse in winter because you rug up, then a couple of minutes later you overheat.!!! 2 minutes later freeze again and repeat until you can't stand it, get up and get on "Who else can't sleep" OOPS!
I am happy to say though after my last little "T" break the hot flushes seem to have abated and i can now wear socks on both feet, even Yipee. Hope I didn't just ooga booga myself by saying that.
Sometimes I wonder whether a longer break between the end of treatment and the starting of HT, so you could just level out a bit, would make some of the SE a little weaker from the start. I know that's not what they recommend but it's just a thought.
Where do you get the magnesium spray from? Might try some on my back.
xoxoxox - My mind is freewheeling with the images it is trying to shut out! It reminds me of watching an interview with Pamela Stephenson talking about how she and Billy Connolly sleep. He wears a CPAP machine to stop snoring and she cuddles up to a body pillow. Oh! the romance!
- That's my hope @Primek. Have a good weekend. K xox
- Only early days so I hope for you like me it improves over time. I took panadol osteo for around 3 months and fish oil for 6.
- *waggles eyebrows* Sleep well @Zoffiel!
- You are creeping me out now, Kate :)
