I have been taking letrozole for 5 weeks , and was quietly congratulating myself on how unproblematic that was, until a few days ago. All joints affected (hot flushes not bad) and am moving around like a very old lady. Tonight I feel very very low. I cannot do any of the things that i would normally do to lift my mood, and feel i am looking forward to 7 years of pain, stiffness, inability to use my hands properly, or do exercise, weight gain through inactivity , or conversely , more drugs in the form of painkillers with their side effects to cope with. This all sounds whiney I know, but I am beginning to
wonder about quality of life versus prolonged treatment. Wonder if anybody else having gloomy thoughts. ?
@nell5 I’ve just started it & really nervous about everything that can happen to our bodies without estrogen let alone just the actual side effects of the letrozole. But I need to do everything I possibly can to stop this thing returning & I’m today more scared of recurrence than I am of letrozole. I’ve informally promised myself to try to get through the 2 years alongside abemacblib and then see where I am knowing that even 2 years can help reduce my risk for a number of years afterwards. As it’s only been 5 weeks for you could you maybe do a mental line for yourself of say 3 months (when I believe many side effects can start to improve) & then see how you feel but deep breaths & walks & keep going until then? Xx
I hear you. I took it for nearly 3 months which was what I was initially told I was taking it for & put up with everything.
Brain fog, memory problems, sore joints, couldn’t open a bottle or squeeze my shampoo, itchy feet, vaginal dryness. But most importantly depression. I planned to disappear on my family so as not be a burden and had suicidal thoughts.
When I was told I had to take it for another 5 years I said no. I value the quality of my life over the quantity of it. Been off a couple of weeks and I’m mentally back to normal and my joints are getting there.
Hi. Are you doing much exercise? I am doing a lot of walking (kids to school and the dog) and body weight exercises and I really notice when ive missed my body weight exercises for a few days. I get stiffer and more pain (particularly in my feet and knees). It also affects my sleep and mood if I don’t do it. I hight recommend exercise including bodyweight exercises.
I just wanted to share - I am over 3 months in to taking letrozole. At 5/6 weeks I too experienced more soreness in my knees… and worried it would just get worse. The good news is that it has really improved - more or less ‘back to normal ‘ as far as my knees go! My hot flushes have ramped up a gear but they are manageable. So it may be that our bodies need some time to adjust. I really have been consistent with exercise which makes a huge difference I think.
I’ve been taking letrozole for 6 years and for me, the side effects fade and then come back especially when the pharmacist changed my brand. So I’ve been on the Accord brand for a while now.
I feel for you. I managed a couple of years and phoned the BCN’s in tears! They made an appointment with the oncologist & he changed me to Exzemestane. Much better & I am happy still having some treatment.
That was a quick reply before bed last night. I’m going to add my surgeon didn’t argue as the benefit to me was small. I was offered an alternative AI but it was thought the side effects would be similar.
Oncologist suggested Tamoxifen but said that increased the risk of blood clots so ruled it out with my family history of clotting. He also said I wasn’t alone and that some people can’t tolerate the side effects.
Having said that I wish it had been manageable for me and I would suggest everyone tries it and sees how it affects them personally.
I’ve been taking Anastrazole for just over 2 years ( of 5). I have the usual aches and pains but they are manageable with exercise ( gym, short runs and pilates) . I also take omegas and magnesium . No hot flushes. Worst were GSM side effects now being managed by vaginal oestrogen. Weirdly , surgeon said at 2 year review that I only had small % benefit from drugs, which I know, he was intimating that if I gave up, he wouldn’t be too concerned. I said that I would stick with it , for now. Am awaiting 2 year DEXA result but I paid for REMS scan, so I know that my spine osteopenia has got worse. Waiting to see what DEXA shows.
I’m about 5 weeks in as well and like you didn’t have side effects until last few days when my legs stiffen up at night if I sit in front of the telly too long, although that may be from building up my exercise. I take my Letrazole in the morning and am trying to walk 2 miles every day and have started yoga again so for me I think that the answer is exercise. I’d rather have sore legs from exercise than from drugs. I take magnesium at night and am actually sleeping better. Hope things get better for you x
@redrobin Movement is key for me to feel better after all this even if one day is just a few gentle stretches or t’ai chi-mentally it’s key plus want my body to feel a bit like my own again after a mastectomy and chemo & all the weight gain. A way of life I won’t let work etc ever overtake again. Looking after ourselves is so important so like you I really hope it helps with the letrozole side effects going forward x
It’s very early days, and yes when the side effects kick in, it’s very tiring. Your system is adjusting and it’s a good idea to give it time. My side effects settled down after about 4 months. During that time I tried different brands of Letrozole. Surprisingly some made me feel worse and some were okay. It takes a while to try them. I take Accord brand and stick to it. However tired you feel, keep moving, even if it’s just a gentle walk. It will get easier. Keep going with them and persevere, they’re our safety net against recurrence. Good luck, it gets better.
Thanks for getting back to me. In truth, no . I have had to go to a physio for a sore knee due to inflamed ligaments. I am pushing myself to walk, but it is painful. Gradually improving. Clearly ( from many kind responses, this is the way out of the Letrozole slump !
Hello, I think you should persevere and see if, for you, things improve. My symptoms did not. I changed to exemestane which helped, for a while with vaginal atrophy and problems with my hands. But now, three years on Letrozole and then Exemestane and I have carpal tunnel in both hands, couldn’t tolerate a smear, still got the joint pains and the flushes. Awaiting a Dexa scan and discussion with oncology about whether to change to Tamoxifen ( which carries even worse risks). To continue doing so much damage to my body with these drugs when the cancer may never come back anyway is starting to seem like a very poor decision!! The cancer might still come back even if I continue with them. I am an indecisive person so making a call on this is impossible for me.
I am have similar problems on Tamoxifen, sore hands, bladder pain, hot flashes, constipation, fatigue, nails peeling, hair dry and brittle and cramp at night in my legs. I have another 4 years of this.
As an aside did anyone else find hot flushes on Letrozole are a whole different story? Mine centred below my belly button, were very intense spreading up to my head and arms and down into my thighs. Also a couple of times an hour. Broke out in a full sweat and felt like I was trapped in a hot car.
Normally centred on my chest, gentler and only about once an hour. A gentle glow like I needed to take a layer off on a warm day.
