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
- Ooops - oh yeah, I forgot to mention the sleepless nights, Kate!! HEAPS of them! LOL Menopause is ANOTHER thing that just keeps on 'giving'!
The anger that you are feeling would well be within the 'normal menopause symptoms', Kate - mine was more a 'RAGE' than just 'anger'. Internally I would be seething, whilst appearing to be 'normal' on the outside.
Oprah Winfrey had some extreme side effects from Menopause but thought she was having a heart attack - as palpitations can also be a symptom! She spent HEAPS of $ on seeing specialists & hospital visits and not being diagnosed for Menopause, then she found this book! The Wisdom of Menopause by Christiane Winthrup ....I recognised myself within the very first page!! I had a copy, but loaned it to someone & never got it back! :( See if the Library has a copy that you can borrow! - Thanks @Zoffiel @Vangirl & @arpie.
I guess I'll just have to cross my fingers and hope that they don't get worse, hope some of my symptoms go as time passes, and find some way of adjusting my psyche to the reality that things will never go back to normal. My quality of life is diminished. That's all there is to it. If I'm to maximise my chances of having a life I have to persist. But I still find it all so surreal, and I have mounting anger. Back to the counsellor methinks... - After 15 months of AI I get very few hot flushes and they are mild compared to the nuclear grade surges this time last year. Unfortunately, the other side effects--aches and pains, sleeplessness, memory loss, speech issues and fatigue are still very much a 'thing.' I still get what I will call stress related flushes if I get flustered or otherwise over stimulated but the duration and severity are much reduced. An added bonus in the last 6 months or so is a drippy nose which accompanies the heat wave. Glamorous. Extremely so.
- @kmakm - what you are experiencing basically IS menopause - and mine lasted 10 years on it's own, from age 45-55 - I thought I'd started 'early' as I hadn't had kids, but apparently those with kids can also go thru it early as well. It was the biggest pain in the arse that I've ever been thru. Some people are lucky & sail thru it - actually feeling empowered and more sexually active afterwards. That wasn't me.
Initially in the lead up to it, there were the random massive bleeds/flooding. Then the hot sweats which were debilitating & often, both day & night. I had them for years. I regularly had to change the sheets in the middle of the night, I got so wet. I used to sleep on a towell to try & mitigate the effects! (Not very comfortable, BTW!) I could feel them 'come on' at any time of day & night - with the heat rising up from your neck to forehead. I also had severe depression & became very angry & intolerant of idiots ..... my boss copped the worst of it - tho hubby got the 'rolling eyes' more often, too! I was emotionally unstable - bursting into tears at the drop of a hat! Vaginal atrophy was the worst ever (and still is) - talk about razor blades!! :( I went onto hormonal cream to try & sort that out (even applying it vaginally) but that only resulted in an abnormal Breast Scan 15 years ago (being called to Newcastle Hosp for followup scans!) so I stopped that pretty quickly as it was the testosterone component of the cream that gave the abnormal 'read'! I still swear that 'the change' brought on my bunions in both feet as I'd never had them before - they were SO painful (and still are, but not as bad as when it came on initially, when I seriously considered surgery, until I read what was entailed!) I can't recall specifically getting the aches & pains back then ..... as I've always had a level of arthritis ... but it is definitely worse since finishing 'the change'!
The good news is - that eventually it WILL all settle down! How long? How long is a piece of string? Probably for as long as you are on the meds, I would think! :( - Hi @kmakm
I had maybe six months of natural early menopause (this was about five years ago). The flushes then were a full on sweat fest as you describe and would happen at random.
Dressing in layers just means that you can disrobe in public and remain decent, it doesn't really prevent the flush/flop sweat IMO. Wearing loose fitting clothing (especially under the arms) helps a little.
These days, after coming off the Pill and going through chemo I get very mild flushes (suddenly feeling hot) and the super-sweatiness only happens if I am moving around (walking briskly somewhere, doing the vacuuming).
So I guess that means there's been improvement, from early menopause to now. I can't track the progression as I went back on the Pill until diagnosed with cancer.
One thing I always do these days is to take a large cotton handkerchief everywhere. Much more effective and less messy for dabbing/mopping a sweaty face than a tissue or handtowel. - Thanks @Sister.
- I don't know what's normal but during last year when I was going through the final stages of menopause (it became official in January 2018), I got shocking night sweats for months and then they just stopped. My joints did get worse, not so much on waking up, but if I'd been sitting for too long. And really bad headaches - not migraines, but they just wouldn't go away for days and only responded to panadeine. Joint pain isn't as bad now just what I can put down to early arthritis and old injuries. The headaches ramped up again during chemo and I got my first hot flushes, apparently due to the last of the oestrogen being shut down. Now on Letrozole, the flushes are still happening but fairly mild.
- I just had the sweatiest hot flush yet. Every part of my body was wet. I've never been a very sweaty person so this was rather confronting for me. And also horrible.
Yes I was dressed in cotton and yes I was dressed in layers...
And this week I've started to get out of bed all hunched over and stiff for the first time since I started Letrozole. I look like a croney old witch from a fairy tale.
It's been almost three months. Is there a point where you get to with this medication where you have all the side effects you're going to have? Or do they keep coming and/or get worse?
What's it like if you have a normal menopause? Do you have hot flushes for a certain period of time and then they go away?
i suppose what I'm asking is if there is hope that things will improve. Or is it 10 years of what I'm experiencing now? Will my body adjust? If so, when? - My oncologist is also very good on research and is leaning towards 10 but is also carefully monitoring bone density. The vaginal atrophy won't get better by stopping anyway but I may stop if the bone thinning gets too pronounced, with his blessing.
- @Vangirl Not surprised. They have a very high non-compliance rate...
