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
- Black cohosh is supposed to work well. However, as with red clover I was told to avoid it "just in case" as they are both phytoeostrogens apparently. That came from the pharmacist and Swisse. Who knows. Remifen and promensil have been around for a very long time and I have heard good reports as far as them working , but, alas, no good for the ER+ What happens with the PR? It's never really mentioned.
- @LMK74 ;)
- Thanks @SoldierCrab, I may just do that and join that group.
@kmakm, lol I liked your description. Got to keep a sense of humor for some of this stuff. - Here is an article from Vic govt including some detail on Black Cohosh
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/menopause-and-complementary-therapies
I wouldnt take anything @Sister until you see how you go on Letrozole and what the problems are for you.
I also can’t say if the Remifemin I had 20 years which I found highly effective is the same as today. - @kmakm pm you some information @Sister not quite as serious re liver damage but still follow up with medical staff.
I will say when there were lots of warnings about HRT many women dropped it and took up things like Remifemin and doctors not happy asthink research grants diminished along with it. - I can't remember what but there can be some real issues with black cohosh - liver failure, maybe...
- Thank you @SoldierCrab. Your support is much appreciated. K xox
- @Romla Interestingly my GP yesterday said that there is no clinical evidence to support Black Cohosh. I've no idea if that's true as I haven't checked. Personally I'm not ruling out anything until I've tried it!
- This may bear checking out with medical people but not for those taking Tamoxifen as there are contraindications.
When I went thru menopause with hot flushes , night sweats , insomnia etc I tried a product called Remifemin which I understood had been used in Germany since the 50s for menopause symptoms.It is a refined version of a herb called Black Cohosh used by native Americans for female problems.It is not oestrogenic but a hormone balancer I believe.
I had tried HRT but had difficulty with progesterone.Anyway I found this product gave me my life back reducing the hot flushes , night sweats etc and enabling me to sleep.
This was 20 years ago , I was 40 going thru a savage early menopause holding down a very busy academic career as well as caring for my first baby.
Remifemin is available in supermarkets and chemists but please talk to your medical team before trying. - I am a member. I posted about it yesterday.
