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 with endone — it lowers blood pressure and can cause nausea and fainting - neither my husband or I can take it without getting very sick - we stick to panadeine forte if strong pain relief required.
- Hi @Doodoo - not everyone gets the same side effects, or as badly - and there are a few different ones that can be prescribed .... so try not to worry too much ;)
I started on Letrozole & am now on Exemestane - and am much happier! :) - @kmakm anti inflammatories will provide more pain relief but if u r really sore I would go straight for endone. Hope u feel better and get some sleep xo
- Gee, it’s tough on you though xx
- @Doodoo Thanks J. Not all of them! I don't have anorexia or my favourite, general swelling!
I'm determined to get to the six month mark. If it's not better by then, my oncologist will probably put me on Tamoxifen. :/ - @kmakm I wish I had an answer. Surely you can’t be expected to put up with this!!! You seem to be copping every symptom possible. I’m dreading starting hormonal treatment!!!!
- I am really achey tonight. Do anti-inflammatories provide better pain relief than paracetemol? Or should I go straight for an Endone? I am very uncomfortable right now.
- Hi @El. My ankles started aching three days after starting Letrozole and have never stopped. It's since moved into my hands and coccyx. My feet and legs ache, especially after I've been still for a while, but it's not the specific ache of my ankles and hands. I've been taking it for three months now. It seems to be getting worse but my oncologist says it will probably settle down by six months. Hope so... K xox
- Hi @El - a few of us did - and mine was pretty bad after 6 weeks, too.
I had it in only one foot & both hands and general body ache as well & the odd hot flush - right on the ball of the foot (not unlike gout, I guess - tho I'd never had that before either!)
I told my Onc & I was changed to Exemestane & felt much better on it (been on it 2 months now.)
Have a Chat with your Onc about the side effects ..... they may be able to make another suggestion xx - Yes, my feet are really sore and painful all the joints. I used to be able to walk long distances with no problems. Now however if I walk to long , I'll be hobbling. I have been on it for 9 months now.
