I was on letrozole for five years. My lower back pain was so severe than I took numerous Advil each day and had a pain doctor inject steroids in lower back every three months. Now I have been off letrozole for two weeks and back ache is gone. I feel twenty years younger!
Does anyone have any advice on whether the side effects of letrozole get better or worse please? I’ve been on letrozole since February this year- prior to that was on tamoxifen for 5 years following surgery/ chemo/ radiotherapy and herceptin for stage 3 b/c ( sucessfuly treated and in remission) I’ve been told I’ll need to take letrozole for life- I’m currently 55 ( I went through an early menopause at age 40 prior to being diagnosed with breast cancer),
initially I felt the side effects of letrozole were preferable to tamoxifen- but it feels on bad days it’s getting gradually worse in terms of joint aches/ stiffness, ( some other minor side effects e.g. Eyesight issues and headaches but this doesn’t particularly worry me…)
anyone with any experience of progressive effects of letrozole/ V tamoxifen ? ( my oncologist tells me I can consider returning to tamoxifen ( again for life) if letrozole really proves too tough…I travel long haul and walk a lot ( life too short not to etc !) and don’t want letrozole to have too much of an impact on life in general!-.whilst being so grateful for the treatment of course! .
thanks in advance!
Sue S
I have been on letrozole for 2 years now. Changed from generic to femara itself 2 months ago…have to pay £122 monthly for this but side effects are FAR less. Loads more energy and sleeping better. Back pain has continued and become worse. Hands and feet also stiffen when not in use. Back got so bad I had a bone scan 2 weeks ago as it was thought cancer had spread. It hasn’t. Arthritic changes noticed but usual for my age (68). Having a dexascan next week to rule out osteoporosis. It will be ‘just’ the femara and though I’d love to feel as fit as I was 2 yrs ago, I’m not prepared to take the risk of stopping this drug. Diagnosed Aug 2014 HER 2 positive with 9 lymph nodes cancerous. Mastectomy, chemotherapy, radiotherapy and Herceptin for a year.
I’m so glad to know I am not imagining how bad my joints and back ache/hurt. I’ve been on Femara for almost a 1-1/2 plus the shot Prolia. I’m literally taking 6 naproxen a day to try and be able to walk and sit at work. I’m sorry everyone is hurting too! Has anyone experienced weight gain? I know I need to exercise but I can’t imagine the severe ache afterwards! I’d have to have something for pain!! I hate to admit that but it’s a fact!
Thank you for listening to me whin?
Kathy
need to start exercising but the.the pain
Hello Kathy
I’ve been on this 20 months now and yes the weight gain is a pain! It seems to be more my waistline has disappeared! But it’s a knock on effect as with the extra aches …we feel like doing less !!
But, it’s a powerful little pill and needs must …
Xxx
Hi Elke, thank you so much for replying. Most of my weight gain is my middle and I don’t have a waist anymore either. Unfortunately, I do not have a significant other who might motivate me to move around but instead a brother who buys junk food thinking he is making me happy. I have begged for the junk to stop but I suppose I could stop shoving it in. I did find a beginner yoga class and plan to go this Wednesday. When. I say I am stiff and and no flexibility; I was not joking. I will report how it goes. Thanks again ?
Thank you Wxn for replying. I’m so glad your ultra sound was clear! I hear everyone loud and clear about the eating & exercising. I wish I had a positive support system but instead I have a brother buying junk for food! Yes, I need to be strong and stop eating it but what can I say. I find a beginner yoga class hoping to improve my flexibility, stiffness and maybe lose some weight. Thanks again ?
Was on femara/letrozole for 15 days. Had muscle pain in my legs and hip pain. THEN I had a heart attack! After 4 days in the hospital where I refused the letrozole, I had an angiogram and echocardiogram. Everything is perfect! No blockages, no muscle damage. Cardiologist can’t say what caused this, but I’m sure it was the Letrozole. Prior to taking this, I was on Anastrozole. 15 days and I was in pain. Came off it for a week, went back and 17 days later in leg/back pain again. That’s when we switched to Letrozole. This time I was on this for 15 days and BAM! Anyone out there with similar events?
I have taken Letrozole for six ears and now I find it hard to even write a check or pick up a cup of coffee. I want to stop the Letrozole but fear I may get my cancer back. Has anyone stopped Letrozole/Femara and what we’re the results. Please before I can’t walk anymore.
Hi
I have been on lettozole now for about 9 months, I count myself as fairly lucky when I looked around me when in hospital and so try not to let the symptoms of this drug get to me although the worst symptom by far is the stiff joints, I have changed brands 4 times and advise you all to stay away from
TEVA it contains aluminium/e numbers! I have now managed to get Femara via my oncologist as my doctor said it was too expensive! Really! I have been on it for 3 weeks and it seems to be lessening the aches however I also take Turmeric tablets and have started on glucosamine too. I have always been on the heavier side but now my ‘waist’ has become a tractor tyre! Devil and the deep blue sea me thinks…I wish you all the best and give C the heave ho!! 
?
Hi, I was diagnosed in April 17 with stage 1 breast cancer, no lymph nodes involved, I’ve had radiotherapy, no chemotherapy. I’ve been prescribed Letrozole and I’m so reluctant to take it. I’m 65, I have been lucky to date with no health issues, I jog 4k each morning and do other exercises daily, I feel that the side effects will limit my quality of life, i have said it will start taking the letrozole due to a certain amount of family pressure but I’m very unsure if I will continue. I wish all of you brave
ladies all the very best. (You are certainly braver than me). Sue m
Hi Sue m
I’ve been on letrozole for about 10 months now and I find the side effects manageable. Joint pain is probably the hardest thing to cope with, but it shouldn’t stop you running or exercising, in fact it will do you good.
Any side effects won’t start til about 6 weeks in. Why not try it and see how you go?
Sue xx
Hi Sue, thank you for your comment, you sound very positive and that is a comfort. I do intend to try the letrozole and I have an appointment with my oncologist in 2 months time, so I should be able to let him know if I experience any negative effects. I have always tried to be active and healthy, these tablets sound rather hard to live with
Sue m
Hello all - I’m new here; this is my first post. I had surgery about 5 weeks ago for a tumour found at a routine mammogram. Grade 1, no spread to lymph nodes, and I’m waiting to see the oncology team to plan when I’ll start radiotherapy. I saw my GP today and am now the proud owner of a month’s worth of Letrozole. I’m planning to start it tomorrow morning and I’m feeling a bit nervous, I already have hot flushes, night sweats and VA like you wouldn’t believe! Once my meagre supply of oestrogen has dried up completely, I expect the above to get worse and worse. Any words of encouragement gratefully received!
Welcome to the forum, Megster.
I’m tamoxifen, but I can relate to your apprehension about starting hormone treatment, as I felt the same, however, as it turns out, I’ve been fine on it. Many women are fine on hormone treatment or at least find any side effects manageable.
Side effects are not necessarily inevitable & if they occur you’ll deal with it then. Understandably, those having issues will post here, not necessarily those who are ok.
very best wishes with it all.
ann x
Thank you, Ann - it’s good to hear from you. You’re right, of course, a thread on side effects is going to be about, well, side effects! I’ll get started and see how I go (massive flush as I type this ?), and report back in a little while. I’m glad to hear you’re doing well on Tamoxifen. ??
Hi. I had stage 1 bc in right breast in 2012 with double mastectomy in 2013. 16 rounds of chemo. Was put on tamoxifen. Started having left leg pain and found secondary breast cancer in bones and liver 38 rounds of chemo. Dr.said I was in partial remission. I’m on ibrance and letrozole. The pain in my back is horrible. Last couple of days it has gotten worse. I have the hot flashes sometimes and can’t get warm other times. Have the light headedness and headaches. The pain in my back scares me.
Room, I’ve been on Letrozole for about 2 1/2 yrs. I had been so fortunate to not have any side effects or major ones at least until a few days ago… My two middle fingers on my right hand, the joint pain is almost unbearable. Came out of nowhere. I am right handed and it’s so hard to do anything with that hand. But try to hide it from others, especially my family, don’t want them to worry. I hope this goes away and there is not more to come. Anyone with similar issues? I was diagnosed with invasive ductal carcinoma in right breast, dbl mastectomy, did not spread and so very fortunate to not have had chemo/radiation. I am 61 yo. Thank you!!
Hi
I’ve been on letrozole for about a year and certainly get very stiff and tight feeling in my fingers, especially in the mornings. I have found though that it seems to attack various parts of the body for a while and then goes…moving on to some where else! Hope this doesn’t linger for you.
Sue xx
I was diagnosed with stage 4 invasive ductal carcinoma at age 58. Dual mastectomy. Been on letrazol a few has now and the pain is still debilitating with no lessening in joints and muscles. I’ve taken every OTC drug or the to no avail. Currently on fentanyl patches with oxicodone for when the pan spikes. Sure, some might think this to be overkill. I think, (which is most important) after going thru what one has to just to survive, I have absolutely no problem taking this pain reliever. I have, as you all have, gone thru enuf pain to last the rest of my life. Why suffer more? I’m old and refuse to give up anymore of my life to cancer. As for ability to do the things I used to? A big YES I CAN! Yoga for the stiff joints. Cycling class for any weight gain. I’m just now looking at reconstruction with a better frame of mind. Since last I saw the plastic surgeon my weight loss had been 7#. Not much but none gained. To all my fellow survivors… hang in there and don’t go down the road of no hope. It’s dark there.