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
- Be careful @kezmusc there are 2 types on b3 niacinamide and nicotinamide and the latter can worsen hot flushes. Remember that from when I went thru the menopause naturally as was a Vitamin B fan. I think nicotinamide the problematical version is more commonly used in supplements.
- Possibly chuck in some B3, B6 and B12. My mothers friend (from the gym mind you) is on one of the AI's (not sure which one, I'll find out though) with similar symptoms.. She says she thought it helped. I did the B3 and 6 but could never really tell whether it was doing anything or not. I've ditched everything this time around so we'll see what happens.
- @kezmusc It sucks big time I agree. I haven't had dizziness with them but I do get some nausea. I haven't counted (I will) but I'm in the vicinity of 10 - 12 a day I'd say.
- Hey @kmakm,
I know it's a different beast but hot flushes are hot flushes and no one tells you how bad they can be.When they were bad, used to pretty much start at my elbows, prickles and pins up my arms, across my chest and neck and then make me nauseous and dizzy. There were about 10-15 a day. It was disgusting. There was nothing I could to to relieve it besides spray myself with a water bottle or get outside in the breeze. Not a lot of fun at work I must say. Just had to suck that one up and sit there like a zombie till it passed.
.
That went on for about 4 months until I took my first "T"break. Then they backed off a lot.
grumble grumble grumble. - Thanks @tigerbeth
- @kmakm that sound awful Kate ,hope you get some relief somehow xx
- @"jackie 4" I concur with @Romla. Time for a chat with your oncologist! If you do, let us know how you get on.
- Sorry to hear this @"jackie 4" . I still get random problems after 12 months but manageable. My worry is bone density as am already osteoporotic.
A couple of random thoughts that may help. I have been told on here the pill coating of the generic Letrozole can cause problems for some that the branded product Femara with a different coating may not. Have also been told on here that sometimes switching type of Aromatase Inhibitors is sufficient to make side effects more tolerable.
Either way 2 years is a pretty good test and maybe time to talk to your oncologist about it. - Letrozole side effects seem to get progressively worse for me. I was fine early on. Legs ache and feel very heavy when I walk. A few cramps and general aches and pains. Cholesterol levels went UP but trying to manage that without more medication. Hot flushes still a regular occurrence. Take Panadol Osteo (2) daily. When I sit with my legs up at the end of the day my legs are very restless and I have to keep shaking/moving/flexing them for relief. Take the mandatory vitamin D and calcium tablets. Have also been taking magnesium. Have taken up water aerobics to help keep moving. Been taking Letrozole for nearly 2 years now.
In the evening I can barely keep my eyes open and quite often doze on and off. Then I get a second wind and don't get to bed til late.
Feeling very old sometimes :( - Sorry but can’t help on why apart from sounds like a nerve issue as cellulitis is an infection whose effects should be continuous.
The reports I’ve hear up here suggest Curcumin might be useful for nerve issues and joint pain.Some have tried turmeric which is trendy in coffee shops I gather and also more inexpensive in tablet form as Curcumin is the refined active ingredient in turmeric and much more concentrated/ potent.
Might useful to read about Curcumin on the Herbs app or on mskcc website that BCNA recommends.I gather the app is very popular with the medical community too.
Get checked though - am hoping you are getting toward the end of your adjustment to Letrozole and things start lifting a little for you.
Big hugs , Romla xo
