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 It's absurd I know but I'm so pleased my pits weren't hairy!
- I have to say, it doesn't faze me in the least, now. Unless I had tights on and had to take them off for some reason - that would be a pain.
- Thank you @Sister, here's hoping.
@Vangirl By some miracle even my bra and undies were the same colour! Not that he saw the combo, I was disrobing behind a curtain, but that is an exceedingly rare occurrence!! - @kmakm I was caught short wearing a frock the first time my oncologist asked me to whip my baps out. Luckily I had on my comfiest full coverage underpants so, in my mind, the affront to my dignity was less mortifying than it otherwise might have been. Glad I was literally wearing my big girl underpants that day!
I really hope the new onc has some ideas about how to solve your Letrozole woes. As @Sister says, it's her job to keep you on the AIs, so she needs to make it feasible for you to manage it. - Fingers crossed that they settle down @kmakm. And if not, then maybe the new onc can come up with better long-term pain management options. After all, his job is to keep you on Letrozole as long as necessary.
- @AllyJay Your theory makes lots of sense to me. It sounds logical and I can only hope it's true! It's exactly three months today since I started Letrozole, and I've got progressively worse. This last two weeks have seen the aches spread, the mood worsen and the fatigue increase. I'd love a plateau to settle into! I hope it settles down soon. Experience tells me I'll get used to a lot of it but I need it to be stable to relegate it to a background murmur rather than a foreground chatter... Still can't get my head around the fact that my ankles are going to badly ache 24 hours a day for at least five years...
- I saw my BS on Wednesday and after some discussion we landed on an oncologist he thinks will be perfect for me. He knows me quite well now so I feel confident in his choice. I have his referral and an appointment for Tuesday week.
Amongst other things we had quite a long chat about my AI situation. Not strictly his area of course, but he knows his stuff. He said I absolutely had to take it as my cancer was so oestrogen hungry. That was good to hear in a way; knowing there's no wriggle room on this stiffens my resolve. However hearing my difficulties he did say let's get you to five years first and then review. And of course he said I could always try Tamoxifen. It will be good to talk to the oncologist about it.
It was a bloody good job I'd had a shower that morning (I usually shower at night) and by some miracle had shaved my armpits, because my BS took me completely by surprise asking to examine me... I wasn't due for this check up until November and so wasn't dressed for it. I'd usually be wearing trousers of some sort so I wouldn't have to completely disrobe, but I was wearing a dress! Anyway, all was good and even though I wasn't worried, it was a relief to hear.
After that I had an appointment with my breast care nurse. We had a good chat. First I ran the oncologist choice past her, and she was very pleased. She gets the real low down from her patients, and I knew she wouldn't bullshit me. There were two other names suggested and she was highly scathing of one and dismissive of the other! She says the one I'm going to see is funky, and really on the ball. Sounds very promising.
She gave me a yoga teacher recommendation, a woman who's had a double mastectomy herself and runs yoga after cancer classes. I've sent an email.
And then I showed her my foobs to get an honest opinion. I mean, she's seen thousands right?! We had a good old chat, about the chesticles and everything. I only got a little bit teary... - When I started Letrozole I thought I wouldn't have any trouble with hot flushes and sweats, because I had very few during menopause nearly 30 years ago. Wrong! I started taking it four weeks ago when I stopped chemo. The flushes and sweats have increased in the past week or so. Not majorly distressing, but certainly making their presence felt.
- That's an interesting theory @allyjay It makes sense, I suppose, and if its likely to be the only sign that the little fuckers are dying the perpetual leaking may not be a bad thing.
- My thoughts on this whole chemical supersonic launch into menopause is this. If you watch one of those David Attenborough documentaries on the Life of Plants in fast forward versus normal speed, everything seems so frenetic. At normal speed, a climbing ivy plant does its gradual thing so slowly, you can't see it growing. Put the footage on fast forward, and they look like fricking Triffids, climbing, twisting and twirling like crazy. In a normal menopause, things change gradually, and so your body and mind can adapt easier, still hard, but not impossibly so. Once your body resets the camera back to a more normal speed, things will settle down. As I've mentioned before, I had already been through menopause very early (mid 30's), twenty years before this shitfest. Before diagnosis, I had been experiencing bad night sweats, in fact that was one of the key things the doctors were following up, (the cause of them). During chemo, and for about three months after, they were horrendous. Up to a dozen times a night and at times needed a shower to wash the slick, oily and rancid sweat off my body. I was told that night sweats can be a symptom of undetected cancer and that the worsening of them during chemo could be caused by rapid apoptosis, the rapid death of cells. Apparently as the cells (cancer as well as all the good ones), die in an accelerated way, they expel all their bits and pieces into the bloodstream, and the toxins from these dead and dying cells overload the body and can cause all sorts of havoc. I reckon you ladies going through this rapid and chemically induced menopause are experiencing a double whammy. Hopefully as the chemo is finally totally free from your body, and all the fast cell deaths are over and done, and your body starts to adapt to the lack of hormones, things will settle down somewhat. I know that this is of little comfort now as you have to deal with this, day and night, but like water, it will level out. I would be very interested to know if our brothers in arms also have experienced hot flushes or night sweats. If they have, then that would show other contributing factors other than menopause alone.
