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
- Thanks @kmakm I will mention this to my oncologist. Wonder what other ladies have been told?
As I said, not sure if my tolerance will last months let alone years!! - @Vangirl Initially, last December, she said 5 - 7 years. However when I saw her in April she said new studies had come out and were showing a substantial enough benefit for staying on it for 10 years. She said they're now studying the 10 - 15 year range. She's really into research and my BS describes her as "a gun" so I have no reason to doubt her. It will be interesting to see what my new oncologist says.
- @kmakm interesting that your oncologist has given you ten years. Is this because of your personal pathology? Mine is convinced that the benefits of taking an AI beyond five years are not proven.
(May be a moot point for me as I have a feeling I won't make five weeks, let alone five years!!) - Thanks @arpie. The thing is, I've got to be on an AI for 10 years. My understanding is that the side effects can settle down as the body adjusts, and that this can occur round the six month mark. So I want to try to tough it out rather than chopping and changing. With 10 years I've got the time to do it so I'm going to try.
I don't have an oncologist at the moment. Mine has quit private practice to do more research. I have an appointment with my breast surgeon next week to discuss who he thinks I should see. And I only see the oncologist once every six months now anyway. Though I will book an appointment with the new one to introduce myself and go over everything. We'll see. - @kmakm ..... don't wait 6 months if the side effects are gross. A friend was put on a cream when she had a skin disease & it was actually burning her more & making the condition worse - but she 'stuck it out' for months before finally complaining about it. She was allergic to it. If she'd told them when she'd first noticed, they would have changed it immediately!
To ALL of you who are having excessive side effects - you don't have to be a martyr to them! Ask your Onc which other meds may suit you better.
Not everyone gets every side effect of every med! Tho those put into early menopause may have more (hot flushes etc) than those of us who'd already been thru it some years ago before being diagnosed with BC.
I whinged enough about mine & after 2 months, was put on to Exemestane instead. I'll have been on it nearly 2 months when I see the Onc in early Sept for a checkup. I am definitely suffering less joint pain tho it IS still there, and my hands/thumbs are still really sore ... but I had that before I started, so expected it to continue.Take care out there! xx - @Jane_Elizabeth Thank you :)
- @kmakm I was on Letrozole for about 18 months, so gave it a pretty good try. I think the clincher for change was when I mentioned to the onc that I was taking panadal osteo every night.
- Thank you @Jane_Elizabeth. It's good to hear from someone for whom changing meds worked. It seems to be very individual. As with so much in BC. I'm gritting my teeth and ploughing on to the six month mark in the hope that my body adjusts. How long were you on Letrozole before you changed to Anastrozole?
- @Jane_Elizabeth I am willing to try all options so your comments are useful!
- Not sure if I have posted this info re letrozole before, but I had aching joints, including wrists, fingers, elbows, knees, ankles, on Letrozole (fbm brand). I changed to Anastrozole (fbm) which the onc said would not make symptoms worse, but might improve them. That was in April, and my symptoms have definitely improved. At the same time I also lost about 10 kilos through diet change and swapped from fish oil to glucosamine, and cut down a lot on sugar where I could. I don't really find it is better or worse with or without exercise.
So not really sure which of these changes resulted in the improvement, or whether it was a combination of all of them. The onc seemed to think it was the weight loss, but I don't see how that would improve areas like fingerrs wrists and elbows.
I didn't have any problems adjusting to the new med, and I haven't noticed any new side effects. And it is slightly cheaper (about $23 compared to about 33 from memory at Chem warehouse.
The way I see it, if you are really miserable on Letrozole, why not try anastrozole. You have nothing to lose, and they both do the same job.
I hope your aches improve, whatever your decision. It's not fun being old when youre not!
