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
- @Marakesh I too was very worried about taking AIs. I started Letrozole 1/8/17 and yes a bit of joint stiffness but basically has been ok. I took Krill Oil capsules suggested by oncologist from the start - no idea if it helped. I walk daily for 1 hour and find it helps a lot. The downside for me is a sharp increase in my cholesterol which I try to manage eating rolled oats every morning and eating low fat - I have tried statins some years ago after a TIA( mini stroke ) but found they caused problems for me essentially memory issues.I suspect those who have undergone chemo may have a tougher start on AIs because of it.
My experience is my body adapted reasonably well. I had a few hot flushes but at 64 am well past menopause anyway and been there done that - younger women may find hot flushes more problematical.I was also osteoporotic with an osteoporotic fracture before starting Letrozole and have 6 monthly Prolia injections which have also not been a problem.Guess I’ll know the impact of Letrozole on my bones next year when I have my bone density checked. Yes like others vaginal atrophy is occurring making Pap smears less comfortable and some urine leakage requiring an ordinary daily panty liner - the latter however may be a by product of a twin pregnancy at 47.
Hope this helps. - Sorry, I have absolutely no aches or pains. But I do have severe vaginal dryness and reducing bone density. Both of the latter are possibly also affected by age, so take heart, younger ones!
- @kmakm I think the delay is just the fear of the unknown . It’s like “the next stage”. It is 7 weeks today since my bilateral mx and Diep . I’ve recovered well but not exactly back to full function yet. I can go about five hours before I need a sleep. I’m back to work in 3 weeks and need to be doing full days . So really hope I don’t experience the fatigue that can come with AI’s!!
I’ll start the pills by the end of the week because I know it’s the best thing to do . 😐 - I want to say 'my pleasure' @Marakesh but that would be a lie!
But no, I'm glad you've found it helpful; thank you for saying. That was the idea, to document in order to help others.
Haven't tried anti-inflammatories yet. Maybe tonight.
Is there anything in particular holding you back from taking the Letrozole? K xox - That is so good to hear @kmakm
Do you use anti inflams at all? I think you said panadol Osteo but wasn’t sure if you use any anti inflams? I like naproxen but know it’s not good for the gut for a lot of people .
I still haven’t started my Letrozole
( they sit on my cabinet and taunt me) ...but I do intend to start this week !!🙄
Did the baseline bone densiometry this morning . Im so glad you started this post @kmakm , I have found it very helpful . Thank you xx - As an update, after four months of taking Letrozole the constipation and mucosal dryness has eased considerably. The skin dryness on my face as well. Not gone completely, but much better.
The joint pain in my thumbs and hands has lessened somewhat as well. It could be the warmer weather, but whatever the reason, I'll take it.
As you were. - @kezmusc Lol indeed!
