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 and @LMK74 I am definitely not coming back next time as a man because by then we women will have succeeded and will have the upper hand. All that hard work should not be wasted!
- @Brenda5 Same here.
- Thanks for the book link @arpie, I ordered it on kindle for about $10. Gosh the first couple of pages reads exactly like hubby and I.
My menopause is a bit different in that I went from fully functioning having periods regularly to absolutely no periods, all the hot flushes etc plus active cancer treatment all at once. It has been a tough thing to endure and I am still foundering. I would have thought my gp or oncologist or breast nurse would have given me a leaflet or some thing to help me understand what the heck was going on with this menopause thing. No one in my family talks about stuff like that. - @LMK74 I hear you.
- In my next life I'm coming back as a man lol. I long for my body before all this shit. :(
- Good resolve @Sister, I hope it works for you.
Talking to my mother about it is pointless as she either makes it a competition about who had/has it worst, or is self-satisfied about how much better she was at coping. She has told me that she still gets hot flushes at 83. Oh joy.
I hope your anxiety doesn't return. Horrible stuff.
Anyway, I was looking for a semblance of an idea of what to expect. And of course it's entirely individual! Well, hunched, sexless, palpitating, sleepless, miserable and aching, I'll just have to put up, shut up and plod on. Physically, life sucks now. I'll just have to accept it and move on. Thank you for sharing your experience. - I took on menopause without knowing how it affected other women in my family (no-one left to ask) and that is often the biggest indicator of how you will go. While I didn't have the hot flushes during the day, I never found it a gradual ride - the symptoms came on quite suddenly, but I was also carrying a lot of stress and anxiety, and sleeping poorly. Unfolding myself from a sitting position in the car was excruciating and I would feel like an old woman for the first few steps. Loss of libido and shocking headaches came with it, too. (Anything sound familiar?) So far on Letrozole, I don't think I have any side effects that are noticeable, except for the hot flushes and that the night sweats are back, but I might think differently if I hadn't gone through menopause first as I suspect that I never went back to my base line normal. I think that I probably just got used to things, particularly with the bc diagnosis to take on board. I don't know if this helps or not.
A couple of years ago, I did read a book (written and published in SA, I think) that was a collection of stories about different women's experiences of menopause. What it did do, was highlight the range of symptoms and severity that is experienced. And just how little is known or recognised about this stage of life. I've done a quick google and I'm pretty sure that the book is "Menopause: women tell their stories" by Debra Vinecombe.
For me, the rage is definitely simmering, and the anxiety is waiting patiently at the door for a chance to be let back in. Is this Letrozole induced, menopause or just life? One of the things I am determined to do (famous last words) is to not let that stress build again. I'm not sure how I'm going to prevent it but I'm going to give it my best shot. - @Vangirl So true. Good analogy.
- @arpie I'm aware of all these symptoms. Before cancer, menopause was approaching and I'd educated myself for what was to come. I was anticipating a natural slide into it, the gradual petering out of my oestrogen, not the hard artificial slam that chemotherapy and AIs have engendered. Surgical and chemotherapy caused menopause is more severe than natural menopause.
Throw in the Big C as well, plus the trauma of my personal case, and I am finding my serve of side effects is sticking in my craw... I haven't had a decent night's sleep since I got the BreastScreen recall letter. So that was 22nd November last year. I wake a minimum of three times a night. That makes everything harder.
It's difficult to know what's cancer treatment related and what's menopause related. They all run into each other. I'm hoping that time will resolve some of them, though it looks like that may only be a few.
Thanks for the book tip, I'll keep an eye out for it. But nothing will convince me that my life now is better than it was before. It's just not. K xox - @kmakm choosing whether or not to take the AIs is a 'Sophie's choice' :neutral:
