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
- My quality of life has also been helped a lot by wool thermals this year too.
- I think starting AIs in the winter is hard as it makes the adjustment phase more difficult especially for those coming out of chemo.
- If you can @kmakm try to hang on until winter ends as warmer weather does help with joint pain. I have been trying hard to maintain daily walking and twice weekly exercise class as it does make a big difference for me but nonetheless wake up most mornings stiff as inactivity overnight causes problems .Big hugs .
- @"Kiwi Angel" From a 2016 US study:
"Previous large adjuvant endocrine trials have reported no significant decrease in overall health-related quality of life (HRQOL) during adjuvant AI therapy [2–4].Despite these data, in multiple research and clinical practice settings early discontinuation is common, ranging from 30% to 70% [5].
Although reasons for early discontinuation are multifactorial, data suggest that up to 30% of patients discontinue AI therapy because of adverse symptoms, most commonly arthralgias [6, 7]." - @kmakm sounds like u r getting every side effect u can your poor thing. I had quite sore hips on Saturday but I do have arthritis there so hard to know. Have been having some cramps stomach pains too. It sucks to have to have to take these tablets that affect quality of life when they may or may not work. I understand why some people stop taking them.
- You are so lucky @AFraser.
That's an option in the holster @"Kiwi Angel". Just want to try to tough out six months to see if everything settles down. The daily battle with constipation is wearing, and the dry eyes, nose and mouth is annoying and not particularly nice. It's all taking up far too much space in my brain.
Now I'm having a massive flop sweat hot flush... - I am so sorry you are having such a hard time, I was warned beforehand by my oncologist that arthritis type symptoms were quite common. Have never had any joint pain or aching at all. Other things, but not that. It’s impossible to fathom.
- @kmakm. Sorry u are having such a hard time. Are u able to try a different version of the tablet?? Sending u the hugest hugs xoxxoo
- Ankles aching like a mo fo. It's also started in my wrists, fingers and most especially in my thumb joints. I'm utterly fatigued and have gone to bed at 6pm on a Sunday night, something unheard of for me. Teary. It's hard to accept this is my life now.
- I'm a slow starter in the morning and normally take my time. This morning though I had to wake earlier than usual and get going immediately. Ow, my left thumb joint was stiff and sore. I've never felt anything like this before. I presume it's a result of the Letrozole. :/
