Hi. It is interesting to hear what your nurse says about effects subsiding after 9months. I am on Anastrozole (Accord) and after 5months my side effects seem to be getting worse.. Sleepless nights, aching knees and brain fog mainly. Has anyone on Anastrozole found their side effects get better with time? I wonder if I should ask to go back to Tamoxifen as I took that for 10 years last time round (finishing 10 years ago). It did bring on an early menopause but otherwise I tolerated it well. I don't think it offers such great protection though....
Hi Pollymay, I wish I could say that my side effects have lessened in time but in my case they definitely haven’t. I’ve been on Anastrozole for 2 and a half years, haven’t had tamoxifen as I was already post menopausal. My main issue is fatigue but also painful joints, particularly in my feet, and brain fog. I cope with it all by adjusting my lifestyle but am very fortunate to have been able to retire earlier than planned, which isn’t an option for most people I’m sure. I had expected to carry on teaching till into my sixties but found I couldn’t cope, even part time. So finally retired last summer at 61. Now that I don’t have to rush anywhere in the morning, when I feel worst, I can cope with it all.
Funnily enough I can walk for England as the saying goes! So that’s what I do, both Nordic walking (recommended by lymphoedema nurse) and just lovely local walks with dog, friend or on my own. It’s really been my sanity saver.
Re going back on to tamoxifen, I do have a couple of lovely friends from ear acupuncture classes at a Maggie’s centre (for hot flushes), and they are both on tamoxifen despite being post menopausal for other health reasons. They’re doing well on it though also have different side effects. A difficult one.
Sorry I can’t be more positive in terms of side effects diminishing, but then again there are plenty people here who have none at all, I think we just don’t hear from them! Wishing you well, HFxx
HappyFeet1 xx
Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
Thanks for your thoughtful & kind reply HappyFeet. I too am lucky enough to have retired early (was also a teacher!) and I'm sure this helps me cope. I walk twice a day with my dogs and do agility with one of them so I do keep moving. It's partly beacause I enjoy this so much though that it worries me more when my knees ache! I have asked to speak to my oncologist about a possible change so will see what he suggests... Is acupuncture good for hot flushes? xx
Hi Pollymay, how lovely to do agility with your dog! But can imagine how it aggravates your knees. Yes the ear acupuncture definitely helped, we all felt that it made a big difference. It was lucky that the last session was just a few weeks before the first lockdown. I meet up regularly with my fellow ‘hormonally deranged’ friends from the sessions and we have all found that although they’ve come back again after over a year, they’re not as intense. I also did a mindfulness course (on zoom) through the Maggie’s centre (at Addenbrookes) and there’s a weekly drop in session which I do as often as I can. All still on zoom, which actually makes it much easier to fit in.
How funny that you were also a teacher! Actually there are quite a lot of folk from education and health services. Glad you were able to escape early too, I loved it but definitely couldn’t manage it once on the ‘nasty tabs’. Good idea to discuss possible change of treatment with your oncologist. Xx
HappyFeet1 xx
Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
My nurse says side effects lessen after 3 months! After 20 months they are still there! Have given up and just put up with it now as I've tried everything suggested.
I have heard so many differing answers, someone told me it will be 2 years before the side effects get better! I suppose we're all different. It's quite depressing that there are so many women out there who have got through the 'hard bit' and are now suffering for the continuation of treatment. i hope your symptoms aren't too bad x
Thanks for your kind wishes. The reason I have given up is the pain is a mixture of lymphoedema, arthritis and possible side effects. of Letrozole. Who knows! If you don't know which, it's better to live with it.
Hope you are managing OK. with all that's going on and a change of medication will help. I changed to Exemestane but had serious side effects so back on Letrozole. Better the devil you know sometimes!
Has anyone else had their cholesterol level increase significantly on Letrozole? My levels have always been between 3.5 and 4 but after 6 months on Letrozole it’s up to 7.4! Not to mention my blood pressure has gone up and I’ve put on a stone in the same time…
Have you tried different brands of Letrozole? The brands can make a huge difference. The first one I had, I stopped after 11 days as my joints were really taking a bashing, particularly my shoulders and I was already concerned about being able to achieve the position for radiotherapy.
I got another brand and started them at the end of RT and they've been totally different. I still have stiff joints and painful muscles plus fatigue but, so far, I'm coping. However, my risk benefit is very low so, if I feel the side effects significantly affect my quality of life, I won't think too hard regarding stopping them ;)
I have been on Accord since the start but thought they were all the same. I have arthritis and a new knee joint 2 years ago so never sure where the pain is coming from. I think you just put up with it in the end but only really notice the worst at night. Have tried painkillers but they are not for long term use.
Thanks for your kind thoughts and good luck to you too.
