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
- @LMK74 me too with the wee leakage. I have been too shy and silly to ask my oncologist about it (he is a younger man) but hoping it is not a permanent fixture!
- This is interesting reading regarding black cohosh
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/complementary-alternative-therapies/individual-therapies/black-cohosh - Well done @Sister. I went in with my fingers crossed that I'd be one of lucky ones that don't have problems on it. That's the way to do it I reckon. K xox
- I've decided that I'm not going to have any problems! No, it's not that I think I can will them away but I don't want to be talking myself into anything. I've taken in what so many have said here and my oncologist went through the possible side effects with me and advised that it could take some time for things to settle down (one of the reasons that he thought staying off work for a few more weeks would be a good idea). Now, I will take it as it comes and see what happens.
- @Sister
If you DO find it gives painful side effects (aching joints especially) remember that there ARE alternatives (but you need to be on it for at least 2-3 months to see what any side effects are - and remember - not everyone gets them!)
I've been on Exemestane now for nearly 2 months (after 2 months on Letrozole) and am finding it is giving me less aches & pains grief than the Letrozole. My pain now is mainly just in the base of my right thumb and right big toe/ball of the foot - and not all the time - just in bursts of 10mins - 30mins now & then. My 'General aches & pains' from my previous arthritis is still 'similar' to prior to starting the tabs, so that is great it hasn't gotten worse! I just take an Ibuprofen & Panadol Osteo at night & in the mornings - and only during the day if it comes on badly.
All the best Gaye ... as @Romla says .... Life is GOOD ;) - Just remember it’s putting you into menopause to prevent recurrence. Stay active as much as you can - try to get decent sleep - keep an eye on your cholesterol- your body and you will adapt with time. Life is good.
- Okay, 'tis done - I've started. At least 5 years to go.
- One thing I have read if anyone is interested in trying Remifemin is it is suggested it be under medical supervision. Please don’t try it unless you have talked to your medical professionals first.
- Red Clover btw is a phytoestrogen and thus a no no.
- @kezmusc remifemin isn’t a phyoesytrogen so maybe safe for Er+ - need oncologists to decide.But not ok for Tamoxifen as are contraindications on Herbs app.Think Red Clover/ Promensil gets a look in on the Better Health article above. Have no experience with Red Lover personally only Remifemin.
