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
- I'm right out there @Sister...
@Flaneuse Yes I did! Mmm, those Lindt balls are my favourite flavour as well. Check out the proportion of grapefruit that's actually in them though, it's pretty small. A few balls every now and then should be OK I reckon.
I'm going to PM you. K xox - Thanks for your thoughts @iserbrown This forum is my lifeline. My chemo, radiation, and physio people are wonderful. The department I've not mentioned are the source of most of the anxiety.
My heart goes out to you and I do hope, with help from here and/or elsewhere that you get on top of this state of mind. We feel like we've been dealt a crook hand when the treatment gives us unexpected challenges, both physically and emotionallyFlaneuse said:I've been awake since 4 am. My anxiety/ frustration is mounting again as I near the end of rads (6 days to go), with the ugly flap of tissue under my arm swelling and becoming more horrible than ever. I need to kick myself out of this state of mind.
Take care and best wishes for the end of rads- On no @kmakm. What symptoms have you got? I wonder why grapefruit juice reacts! I have finished chemo now yay!! Start radiation & AI soon. Not looking forward to it xx
- @kmakm But you enjoyed it, didn't you? @Sister I adore grapefruit and judge it a deprivation to have to live without it. And of the Lindt fruit sensation chocolate balls, it's my favourite. I bought a packet while I was on Letrozole before my surgery, not thinking, and gobbled a couple of handfuls before I realised it was forbidden. I was back on Letrozole between chemo and rads and will go back on it after rads, so the long-term adventure on it is still to come for me. I've been awake since 4 am. My anxiety/ frustration is mounting again as I near the end of rads (6 days to go), with the ugly flap of tissue under my arm swelling and becoming more horrible than ever. I need to kick myself out of this state of mind.
- Living on the wild side, @kmakm! To be honest, I can't believe my luck in it being grapefruit that's not allowed.
- I just had five mouthfuls of grapefruit juice.
I'm bad. - @Doodoo Thank you for those beautiful words, I appreciate them. You are very kind and thoughtful. K xox
- For me I struggled settling into Tamoxifen and eventually tried taking it the middle of the day, straight after lunch. Time has passed and I am now on Femara (Letrozole) and stick with the same routine, middle of the day.
Little changes can sometimes make the world of difference - Onc may have a preference but they are not the ones trying to adjust the body to get through the long run of the medication
Take care - It certainly can't hurt to try @kmakm
