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
- Hello everyone,
Thank you for all your great discussion. As you can see you have all had very different experiences regarding hormone therapy.
Regarding which hormone therapy to take, there is no 'best' hormone therapy. It is very much dependent on the individual situation as to what hormone therapy will be recommended by your specialist. @iserbrown posted the link to our resource booklet if you would like further information. If you are at all concerned about your treatment we encourage you to speak with your medical team or call our helpline on 1800 500 258.
Hormone therapy and breast cancer
https://www.bcna.org.au/media/5850/hormone-therapy-and-breast-cancer-booklet-112017.pdf - Thank you to all of you for sharing your experiences with AI’s. I’m sorry some of you have had the joint pain . That would be hard . ☹️ It’s good to hear that some of you have had improvements with symptoms over time and others haven’t had any difficulties at all.
I’ll let you know how I go x - @Marakesh - I am coming up to 12 months since my lumps were detected - my diagnosis confirmed in early Jan & surgery in mid January. I had 4 weeks radiation prior to Easter & started taking Letrozole a few weeks later. Being 64, I'd already been thru natural menopause over a 10 year period (from age 45) & already had some arthritis in my joints and quite severe vaginal atrophy (even a kiddy sized speculum is painful.) So I was expecting the joint pain (in particular) to get worse once on Letrozole & that was exactly what happened, exacerbated by my existing arthritis.
After 6 weeks, I had a review with my oncologist & when I described my side effects - she immediately suggested I try a different 'type' of AI - and I started on Exemestane/Aromasin instead. I have not had as many side effects or as severe and am very pleased with the decision we made to change AIs.
As others have said - not everyone gets severe reactions - so all going well, you won't either!!
That is great that your BS has suggested you keep a diary for 6 weeks on any side effects - as my side effects started within 10 days & I was 'over it' by 6 weeks (and I'd been documenting them as well, even tho not asked to specifically!) (MY BS had originally told me I would be on Tamoxifen - I'd never even heard of Letrozole or Exemestane!) so was surprised when the Onc put me onto Letrozole initially.) Like you, I thought Tamoxifen was for pre menopausal women! (Tamoxifen has been on the BC radar for SO LONG, I think it is the first name that comes to the BS's mind!!)
All the best when you start taking the tabs xx .... On Letrozole, I was taking pain killers & anti inflams morning & night ..... now I just take an anti inflam at night (as much for my arthritis as anything else!) The base of my thumbs are still sore - but I had that before starting the meds as well ..... - @Marakesh
Not everyone suffers all the side effects from medication. Some are fortunate to have minimal and others the full gamut. I don't know where you are at in the cycle of life but some are thrown into menopause and the side effects seem magnified as it is a double whammy!
We are prescribed the medication for a reason and hence you need to settle into a routine of taking it - for me I settled into taking mine at lunchtime, but we are all different in where we land with taking it at a time that you will remember, that you are busy and don't notice any effect!
Please don't let the fear of the unknown overtake as the unknown could be smooth sailing!
You've conquered the bilateral mx and Diep - this hopefully will be a walk in the park!
Take care and concentrate on yourself - I have also been one of the lucky ones who has not gotten too many side effects - a little bit of stiffness but, so far, that's all. Don't be scared to start taking the AI - you won't know how you're going to react until you start and you may be worrying for nothing. And if you do have problems, then you can address them.
- Good on you @Marakesh. I read all these responses before I started, five weeks after my BMX & recon. I crossed my fingers in the hope that I'd get off lightly or even scott free but it wasn't to be for me. As with everything BC related, we're all different, so please go into it with hope at the very least. Note that despite the troubles I am having, I am still taking it. Letrozole is the best hormone therapy we have. I persist in order to persist! K xox
