Hi, I’m feeling very nauseous and have a terrible migraine. Any time I eat I get acid reflux and bloating. My hands get very stiff and at night and a little swollen. My fingers are tingly. If I move too quickly my finger joints really hurt. In the day time the joints are better than at night but it’s still very bad.
I’m also feeling cold and shivery when I’m not sweating. Got an appointment with my oncologist in two weeks, but ATM I’m just feeling really rough.
Hi small&mighty I hope you’re doing well.
I totally get it, the side effects from Letrozole are not for the faint hearted. I started on them in February & then was put on Ribociclib also for stage 4 Lobular Breast cancer.
I spoke with my Nurse on Tuesday at the hospital and I had a total meltdown, I was so upset with trying to cope with side effects (or not coping) The such low mood, sheer exhaustion, brain fog, loss of sense of humour, can’t think straight, hair loss, somehow thinking for a second that the number 5 is lower than the number 2 
etc etc.
We both agreed to have a break from the medication which I’m grateful for but I’m so dreading having to go back on it. I know it’s keeping me alive & I’m so grateful but my god it’s tough going!
I’m on day 4 drug free & I’ve a little energy slowly returning although my jaw aches & my teeth feel weird or under my teeth I should say.
Apparently the Denosumab Injections I have can cause bone growth on the jaw!!
Ohh the joys of this awful disease 
Take care & I sincerely hope & pray that your side effects ease off for you X
I read your post with interest as I am in a similiar position . I am 70 this year and have been on letrozole for 3 years and 4 months. I had an appointment with an oncologist recently who said I could stop taking letrozole if my quality of life was impacted. I have had several problems over these last years iie high cholesterol, thinning hair, ostopenia in bones, arthritis getting worse etc !
I wondered if you did stop the letrozole and how that has been ?? I am seriously thinking about it but full of doubts still !
Hi @LottyS yes I stopped it and, after almost four months off it, I am feeling so much better and a lot more like my old self. The brain fog has gone which was my worst symptom (I never really got joint or muscle pain) and my GP has agreed that I can go back on to my much smaller statin (all my family have congenitally high LDL and strokes have been prevalent in my mother’s side of the family so I accept that I should take it). I occasionally wonder if I’ve done the right thing but the positive difference in my mood and mental acuity is so marked that I will continue as I am now. I have two more annual mammograms before being signed off and then will have elective mammos every third year to keep an eye on things but, other than that, I’m choosing to let BC recede into the background. I know it is a big decision so please let me know if you have any specific questions as I’m happy to be a sounding board - but will never try to persuade you one way or the other, it has to be your choice.
Thankyou for your reply- much appreciated
I am in a similiar position I feel . Three years 4 m on letrozole , 70 yrs this summer. I felt such relief when I saw the oncologist a few weeks ago and after discussing my health issues , she told me that benefits from letrozole of improving survival at 10 yrs would be around 2% . But actually making that decision to stop is still so hard!
I have ostopenia in my neck , hips and back and so a bone infusion is on the list . I know all these things including arthritis , high cholesterol will deteriorate with another 20 months on letrozole . At the moment , I am taking it as I have the brand that suits me best ( which pharmacy could not get for last 6 m) but intend to take more breaks and at any point may just stop ! I had terrible headaches before Christmas from the arthritis in my neck and so I think I am monitoring my health issues and know I could stop if I need to !
Pleased to hear your improvements after stopping letrozolec
I have been on Tamoifen since Aug 2025, and was at the point of giving up on it as I had zero quality of life. I went from feeling half my age to feeling 90 years old. I had constant joint pain, terrible insomnia and the hot flashes were like a savage volcano erupting through me, approximately 30x a day.
Meanwhile, my GP was monitoring me for high blood pressure, which has recently been brought under control with low dose Ramipril. My blood tests also showed a vitamin D deficiency, so he advised high dose Vitamin D supplements, which I have been taking.
I thought no more of it, as I was focusing on the prospect of potentially leaving my very physical trades job as I could not cope. Then, I noticed that I was starting to feel more myself, the fatigue had gone, my bones aching less, I was sleeping better, and best of all the hot flashes had dropped in intensity to a much more manageable level.
It has remained this way for a few weeks now, I can’t see any other reason for this happening other than these changes. Looks like I may not be giving up my job after all.
I hope yours will ease too! Hiw are you feeling ?
Hi Sim2 how are doing? I really hope you’re feeling okay 
Well after reducing the Ribociclib to 400mg I’ve started to feel a little less tired & I can think a little more clearly thank goodness. When I was on 600mg I felt like I was trying to think through treacle, the brain fog was just horribly unbearable.
I hoped my hair would stop falling out but unfortunately that hasn’t happened 
My skin is very dry & my nails (hands & feet) break easily & are thin with vertical ridges going through some of the finger nails. My ankles still swell up too & my joints ache but on the whole I’m thankfully feeling better than I was doing which can only be a good thing.
I know I’ll be terrified of getting my next CT results in June, knowing I’ve lowered the dosage but I had to do it as I just wasn’t functioning on the higher dose XX
Good morning Loki. Ah so sorry to hear about all your side effects, but also seems like you are seeing some improvements which is great! Take your winnings where you can! 
do you think you will continue sticking with the meds?
I know it’s scary to not be on the full strength meds, but you are still taking them, all be it at a lower dosage. At the end of the day, if you look at predict scores the biggest chunks come from the operation and chemo, the rest of the meds give you much smaller percentages of prevention. So ultimately, you ar still getting an excellent treatment, and you must balance that with some quality of life. Feeling just that bit better in your body makes such a difference doesn’t it? But the scanxiety is real, especially given you have/had a later stage cancer. How are you coping with that? Do you have anyone to talk to?
So sorry about your hair. It’s so hard to go through everything and to then have your hair thin out. Is the state bad? Could some short haircut help with that? My hair is growing back very well atm, but I’m trying not to get too attached to it.
And yeah, join the - lather yourself in the moisturiser club lol. I feel that moisturiser should be on a free prescription for cancer patients. Have you found anything that works for you? I’ve tried a bunch with mixed results, but I find for my skin, almond oil mixed with castor oil and some essential oils is the best (i mix it myself). The downside is that its quite messy, and I can’t go dressing up right after moisturising. Also I like ‘helping hands’ hand cream from lush and it’s helping my nails too, although again its got a bit of an oily texture.
Myself, I’m just about coping with everything. I was feeling so bad, that we had to discontinue letrazole and so I couldn’t start ribociclib either. Atm I’m only on Zoladex for inducing menopause. My current symptoms are headaches, sweats (that feel more like tropical showers tbh), lack of mood and motivation (your comment about not being able to joke made me chuckle cause I feel the same way) and stiffness and joint aches everywhere as if I’m 90y old… ah and ultimately I think I’m starting to forget what sex is.. Apparently it all is considered good… I find myself flipplopping between being grateful that I’m not on all the meds yet, wanting to stop even Zoladex, and being scared that I’m not on all the meds yet. On a positive side my scans have just come back clear, although that has been twisted a bit by my mind thinking that maybe they missed smth…
Mentally it’s a wild rollercoaster and i’m not sure I’m fully starpped in but I try not to think about it too much.