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
- @Sister Once again we are sisters on this road.
- So - the verdict is in...I start Letrozole as soon as I get the script filled.
- @"Kiwi Angel" a chat to your onc/GP about your sleeplessness might be an idea. An old trick and over the counter is the old fashioned antihistamine Phenergan as a temporary fix. Getting into the habit of NOT sleeping makes a lot of things harder.
- @Harvey1903 - I have been on Tamoxifen for a month and the only thing so far I have noticed is sleep disturbance - this week I have been having trouble finding the right work sometimes but I don't know if that is the tamoxifen or lack of sleep from the tamoxifen!
- Thanks for that info will look at it. Also looking at starting exercise program and diet. :)
- Not sure if your Breast care nurse would've given you the booklet from BCNA on Hormone Therapy, if not here is the link for you to scroll through
https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/
https://www.bcna.org.au/resources/booklets-and-fact-sheets/#hormonetherapy
It's not all bad for most of us, just some end up with the full gamut of side effects, some with a couple and then there are others with none at all! Here's hoping you end up in the none at all!
This is from the brand of Tamoxifen that I was on:When to take it
Take TAMOXIFEN SANDOZ at about the same time each day.
It does not matter if you take TAMOXIFEN SANDOZ before, with or after food.
The trick is to take it at a set time each day so that the body can adjust. We all have a heightened awareness of our bodies after the trauma of diagnosis and treatment
Take care and wishing you smooth transition to hormone therapy - 100% agree with that @Romla. My slog through the early days of recovery and the AI have not been helped by the cold and grey of a Melbourne winter for sure.
- PS Might be easier the adaptation phase soon as we are moving into Spring as I don’t think cold , wet and windy days help us on any level.
- Basically if you are premenopausal Tamoxifen is what they recommend, if you are post menopausal it’s an Aromatase Inhibitor of which there are a few different types.Each drugtype has its up and downside eg Tamoxifen helpsbones whilst Aromatase Inhibitors thin bones.Not every side effect is experienced by everyone.
Do a bit of reading from the BCNA My Journey kit - I think there are some suggested questions embedded in it you may like to ask.Try to avoid Dr Google unless it’s a recommended site ( BCNA book I think lists some at back)
Everyone is different in how they respond to hormone therapy but the body and you will take a while to adapt.Most people do adapt and have the occasional issue thereafter.I did not have chemo and took 3-4 months , chemopeople seem to take a little longer - persistence is the key .
For me the biggest help ( I take Letrozole an Aromatase Inhibitor) has been to keep moving - walking , exercising - it’s been good mentally and physically.
Keep in touch with your decision as many on here will help .Do not be scared - there are a lot of us on hormone therapy and we are still enjoying our lives as you will too. xo - @Harvey1903 Oh Julie I know! We all do it. I like to think this whole experience has made me a little better at not crossing them ahead of time.
