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
- @kmakm I found this -looks interesting esp clonidine for women who have had breast cancer and having hot flushes/insomnia might be worth a chat to your GP - is a 2018 article
https://www.thewomens.org.au/health-information/menopause-information/managing-menopause - @kmakm and @Sister I seem to recall ther is some new treatment for vaginal atrophy maybe @SoldierCrab @primek can advise who are the mods for the talking about vaginas group but may be better discussed within the group.
@ kmakm am sorry you are doing it so tough - am going to do some research/ thinking about your side effects and will see what I can find to help. One thing I do remember that may help with hot flushes is to avoid hot spicy food as it seems to make it worse - am the Laksa queen and Indian food fan and learnt that 20 years ago the hard way. - Sounds like a plan! Good luck with that!
- I'll get there eventually @Afraser! I'm working on one thing at a time and currently it's sleep.
- Vaginal atrophy is a pain in the nether regions. There's a group here on the subject - Let's Talk About Vaginas - may be helpful.
- @Sister The practice.
Your onc sounds lovely.
I am not enjoying the vaginal dryness. I miss my youthful juices. - My onc has been quite open about the side effects and has recommended that I take the rest of this term off work as well to get over the radiation and get my head around the AI and develop strategies for dealing with it. I'm on it for 5 years in the first instance and then he'll review it dependent on how I'm coping and what the current research is showing. I presented him with my usual long list of side effects and their progression at the appointment and he went through it all. Got to the one about dryness in the nether regions and his comment was "well, unfortunately, that's about to get worse", but the clinic have just taking on a sexual health consultant and he wants me to see her.
@kmakm Did your onc quit you or the practice? - @Romla My ankles started aching on Day 4 and haven't stopped, though the pain ebbs and flows in strength, some weeks are better than others. I can't make rhyme or reason of it. Seems unrelated to exercise or no exercise, or temperature.
It's made me very dry (skin, mouth, eyes) including my bowels, so constipation is an issue.
Worst of all is the increase in strength and number of hot flushes, now also sweaty, especially at night. And with the new side effect of sometimes feeling as if I'm being painfully pin pricked on my hands and forearms for as long as the hot flush goes on. They wake me up repeatedly, up to six times a night, and ocasionally more. This is making me very, very tired. I want to return to work next year (medical admin) but I would be incapable of doing that on the amount of sleep I'm getting at the moment.
My oncologist has quit so I'm currently working with my absolutely wonderful GP on getting a handle on these problems.
I can manage OK with all of them except the sleep. The others are uncomfortable but the sleep deprivation is making my life and the life of my family sub-optimal.
But I'm not stopping. I'm doing everything I can to stop it recurring or metastasing. No regrets.
Thank you for asking. K xox - @sister that's what I have started on , however i was told to wait until 2 weeks after i'd finished the radiation,so that I was relatively healthy !
To date I've been ok , the odd mild hot flush & i'm very tired !!! so hope it doesn't get worse !
Have to wait & see - How are you going on it @kmakm?
