Letrozole 2.5mg

[Honeystride]

Hi ! New poster so please be kind. I’m 3 years post BC. I was prescribed Tamoxifen which I took for 2 years & then stopped as the lack of sleep was making QoL awful.
Since then I’ve had an oophorectomy & at my 3 year cancerversary the Onc prescribed AI ‘s - Letrozole 2.5mg.

my question is side effects- I’m one week in and the headache & pins and needles are hard going. Does it calm down at all???

ax

I just had letrozole prescribed today by my oncologist after finishing my last cycle of chemo last week. It’ll take a few weeks for his letter to get to GP I expect. He said I have to take calcium too. My mum was taking it for years after her breast cancer, she also hated the stuff because of the size of it and chalkiness. Really not looking forward to the letrozole. I already have an autoimmune condition that causes joint pain. I am going to go to the gym which I will hate and I am bordering between overweight and obese. I have longstanding issues with impulsive eating that I know I need to tackle. I just hope the Letrozole is ok. I have to take ribociclib too, when my local NHS trust finally signs it off…

For people struggling on Letrozole, I highly recommend switching to Anastrazole. Both are AIs with similar outcomes. Ive been on Anastrazole for nearly 10 years. About a year ago, I asked to switch to letrozole and within 6 weeks I had awful pain in my hips and knees. I decided to switch back to Anastrazole and within a month or two the pain had gone again. The side effects just aren't as harsh.

I’m 4 months in on the Letrozole journey. I’m finding the hot flushes more frequent. Not sure if it’s partly due to the weather.

Aching joints have been manageable and not as bad they were to begin with. I’m weight training, drinking lots of water taking glucosamine and vitamin D. I do try to incorporate exercise and movement into everything I do.

@Dancethroughtherain i don’t think the hot weather helps on letrozole. I’ve found hot flushes more frequently this past few weeks. im similar number of months on it.

im also on Ribocylib now this past month and unfortunately got sepsis after catching the summer cold (had no idea I had sepsis).

it’s all the gift that keeps on giving 😩

@Thirdtimeunlucky2025 Oh that looks like a nasty (but necessary!) medication to be on.

I’ve been watching the Kylie Minogue documentary on Netflix. She talks about her experience with breast cancer. Very moving, loved what she had to say on it, especially ‘you’ve got to remember, with cancer, I was still the same person.’ ‘I remember coming out the other end of it feeling more like myself than ever before’ 😍.

@Thirdtimeunlucky2025 I’ve also increased my oily fish intake. I think I might ask to have my bloods checked again after a few months on Letrozole. I think I should probably be taking a statin.

Does anyone have any experience of breast lymphoedema? Unfortunately this is my radiotherapy gift that keeps on giving.

I’m waiting for a lymphoedema clinic appointment. It’s a bloody nuisance but it’s put me on the breast reconstruction list which is quite nice. I quite fancy a boob job 😂.

Just wondering how everyone is getting on. I seem to have hit an all time low. Brain fog, remembering which day of the week it is, what I’ve done, what I have to do a real struggle.
niggling pins and needles in hands and feet, dull ache in lower legs and feet, persistent and sore. Really struggle to walk after about thirty minutes on my feet.

currently away ‘sightseeing’ but not enjoying myself and I feel so fatigued and think im getting depressed now.

the ribociclib made the skin fall off my feet badly so the dose was reduced to one tablet, that’s now better but still constipated but actually feel that’s more manageable than diarrhoea, I had a zolondronic acid, number four, three weeks ago and am wondering if that’s adding to my difficulties.

@Thirdtimeunlucky2025 we’ve interacted before about Letrozole/ribo. I’m on month three of the Letrozole. I’m doing ok, but I’m not back at work yet, where brain fog will be more of an issue. For me it’s not been too bad. Painful knee and my joint issues are worse. But I am going to the gym to try to manage that. I know they won’t let you switch to Tamoxifen without also stopping the ribociclib (because that’s what the research was and that’s nice recommendation), but you could ask to go onto another aromatase inhibitor? I’m seeing the oncologist next week about the ribo. Doubt I’ll start it until November.

I'm still doing ok. I do get pain in my knees, and my mobility has decreased somewhat, but the doctor reckons that is mainly just down to aging and general wear and care. And I'm noticing hair thinning.

My last CT scan showed that the cancer was 'stable;' which was a bit disappointing as on the previous ones it had shrunk ( I have endometrial cancer in my pelvis which is the reason for the Letrazole, which I've now been taking for a year). My next scan is at the end of the month so I'll see how it goes from there.

I hope it’s ok to jump on and ask… has anyone decided not to take Letrozole?

I’m in the preventative phase and I’m very much leaning towards not taking it. I’ve talked it over with my oncologist, she was really understanding.

Here’s the thing, my three children are primary age and I don’t stop, they don’t have grandparents or anyone who ever helps with any degree of childcare. I also have one parent diagnosed with dementia and I’m in the process of taking power of attorney and managing them day to day and my other parent is going downhill fast. I’m doing a two hour round trip at least a couple of times a week to help them do day to day tasks ie food shop and tidy house. I can’t slow down if I don’t feel well, I can’t slow down if my body aches and I really can’t afford to feel depressed because I’m responsible for too many people. Has anyone else declined the tablets for similar reasons? Thanks for reading x

@WinderwallI think, if I was in your position, I would be looking at the percentage benefit for your profile using the predict tool. Then decide whether it is worth you persevering with taking it.

@winderwall I'm not clear from your post if you are currently taking it but considering stopping due to side effects you are experiencing, or if you are thinking of not starting it due to the perceived risks outweighing the benefits?

(I'm not in the same position as you as I know the cancer is present and incurable - being offered just a daily tablet of Letrozole was a big relief to me compared with the other treatments potentially on the table (chemotherapy, immunotherapy))

Thank you both for answering.

I was diagnosed in July 24 with Her2+, ER+ stage 1/2 BC. I’ve had chemo, surgery, radiotherapy , followed by a year of IV kadcyla and I’m now considering whether to start taking Letrozole. I just feel so done with it all, I know I don’t get to say that and I’m so so grateful to be here but I’m in the sandwich of young dependent children and rapidly aging and dependent parents. My original oncologist was so matter of fact and gave me what felt like a never ending list of common side effects and it feels so overwhelming. If I don’t feel well I have to just get on with it.

I’ve been taking Letrozole alongside Zoladex injections for around 4 months now. I had to come off Tamoxifen because it caused a ton of polyps that required operative treatment. It was horrible to start with, painful arms and fingers, hip pain etc. It has settled now. I have been put into medical menopause so the hot flushes are bloody awful but I can deal with it. What’s been the most difficult is the hair thinning. I am only on it for a year (as I had to have 7 years post BC meds) and I will be glad when it’s finished.

Im sorry to hear about all the side effects some of you are getting with letrozole. I took it for two years after my breast cancer surgery and initially had horrendous side effects. The very best advice I was given, by Breast Cancer Care, was to switch to the original brand of letrozole - Femara - rather than taking the generic versions. I had already noticed that some the side effects from some brands were much much worse than others. I honestly don’t think I could have got through the two years if I had stayed on the generic pills but once I switched to Femara tje side effects reduced very dramatically. While doctors cant specify a particular generic brand, they CAN specify Femara on your prescription, but most dont like doing so because it is very significantly more expensive than the generics. I persuaded my GP to let me try Femara for a month, and it really was like switching off a lightbulb and the side effects reduced by about 80% within a couple of days. As time went on, the side effects did start to build up again a bit but nowhere near like they were with the generic versions. I was a ‘someone like me’ volunteer for BCC after my treatment and was matched with a number of women who were experiencing bad side effects from letrozole and every one of them said they got a big improvement when they moved to Femara.

I found similar issues when I was moved to tamoxifen for three years, although not as extreme, and again, my GO agreed to prescribe the original branded version, Novaldex, which reduced the side effects again.

@Winderwallwould you consider trying taking it to see how you get on? It may not be as bad as you think.
I have been taking letrozole for 9 months and I’m not feeling too bad at all. I have stiff ankles when I first get up or sit for a long time but it soon eases up. I did have more aches in the first 3 or 4 months but they stopped. My mental health has been fine too.
I do go to the gym 3 times a week and go for a 20 minute walk every evening which I think helps greatly. I do weights and cardio. Before I was diagnosed I didn’t do any specific exercise and I now feel and look better than I have done for years.

@Winderwall I do think that my issues are a combination of three different things so it’s not just letrozole. I think it would be better to try it than just cast it aside.💐💐💐

Are the pins and needles in your hands and particularly bad at night? If so it could be carpol tunnel. I had this at first, but 9 months in has really calmed down. I bought wrist splints from amazon which really helped.