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
- He he, Glad that that is just a theory about Tamoxifen @Kmakm. The reality is a little different. LOL
- Hahaha @kmakm 😂😂😂
Thanks guys for all the info . The booklet is useful too, thank you @iserbrown
In my case no ovaries and no uterus or anything much else now! All gone years ago. It was an eye opener to me that fat cells and other bits in my body can still produce estrogen . My cancer was er+&pr+
Anyway clearly I produced enough hormone to feed this cancer. ☹️ Which I’m told is now gone.
It’s good to hear AI’s are good at preventing reoccurrence . Heres hoping Letrozole works for me.
Years ago I was put on tamoxifen for a couple of months by a BS. Not because I had BC but because I’d had many needle biopsies and he wanted to show me that my lumpy breasts were only lumpy because of the hormonal effect. I remember the change in my breast tissue which stopped being painful and became soft and I suppose fatty after a month of treatment . - @Marakesh My oncologist uses Tamoxifen as the fall back position as well.
The idea is to stop oestrogen. They both do it, but with different chemical processes.
Your body fat produces estrogen. Your ovaries still produce a little bit after menopause. Both are enough to feed estrogen positive breast cancers. Removing the ovaries stops that source of production.
The estrogen that's made in body fat uses an enzyme called aromatase. Aromatase inhibitors stop this enzyme from working. Letrozole & Anastrolzole are aromatase inhibitors.
Tamoxifen doesn't stop estrogen. It competes with it to bind to estrogen receptors in a breast cancer.
AIs are better at preventing a recurrence. Tamoxifen acts like estrogen everywhere else other than your boob. Theory is that it's less disruptive to your normal body processes if you're still ovulating.
Once you've stopped ovulating then why not reduce risk even further by preventing estrogen production all together.
Ovaries out, no estrogen from there at all. AI, no estrogen from anywhere else either. If cancer is present, it's starved, goes into stasis and eventually dies.
Clear as mud?!
@Marakesh
Have you seen this publication as it will give you a deeper understanding of treatment. I had the similar view about Tamoxifen however my Onc soon discounted that view
https://www.bcna.org.au/resources/booklets-and-fact-sheets/#hormonetherapy- Hi @kmakm , he also said if symptoms become too much ( to the point of quitting) they sometimes switch to Tamoxifen. That’s interesting to me as I went through menopause surgically ten years ago . I thought Tamoxifen was for younger women who were pre menopause ? Anyway will wait and see and think positively that I will sail through 😜
- Shall I purchase?!
- @Marakesh How interesting that you've been asked to keep a side effect diary. I continue to be amazed at the variance of treatment styles that are out there. I haven't been asked by either oncologist to keep note.
- Well it’s time for me to join this thread as I was handed my Letrozole prescription yesterday by the breast surgeon . My daily pill for the next five years. I’ve been told to keep a symptom diary for the next 6 weeks and BS will let me know if any of the changes are down to the Letrozole . Fingers very crossed right now that nothing happens . Baseline bone scan booked for two weeks time . 😐
- Thanks @kmakm xx
- @Doodoo No symptoms that I can discern!
Congratulations on finishing chemo. Bloody good to have it behind you. Try not to stress about the AIs. You may not have the reactions I'm having. And if you do you may cope better than I am!
Enjoy the break between chemo & rads. K xox
