I have been on letrozole for around three months and am suffering with dry eyes and eyesight issues as well as really achy and painful limbs and joints. I thought I would persist until after I heard back from my bone density scan in case any supplements they offered me would help. I haven’t heard back yet and the scan was about three weeks ago. Should I just assume they have nothing to offer me or should I chase this up, I am really thinking this medication is not for me at the minute. I feel the cancer itself was not the problem however the treatment after if the problem, just thought I would check to see if anyone is in the same position as myself x
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Hi @mitch1
Just to say firstly that my Dexa scan results took a good 3 weeks to come back - I was told to expect this so I would give it a bit longer and then speak to your surgery if you haven’t heard anything as results go there first then they forward them to you.
If you haven’t already get some help for your dry eye issue - it can be a side effect of Letrozole but quite a few women just develop it anyway after the menopause without AI . There may also be some help for your joint pain.
I did stop taking my AI therapy due largely to joint pain plus my Dexa scan showed secondary osteoporosis and I have a family history of osteoporosis and joint related diseases as well as other underlying conditions. Also I was a very early very small grade 1 stage 1 of a type that rarely spreads though I was strongly ER / PR+ and my Breast Surgeon had said that if my anti- oestrogens therapy didn’t agree with me it would reasonable to stop it.
Like you at around the same stage I felt like the treatment was worse than my cancer but would advise you to think very carefully before you do that . I had an appointment arranged with my BCN to discuss it and for whatever reason they never rang me. I was going to a festival and wanted to be able to stand walk about and dance so in a fit of what I can only describe as adolescent style pique I pretty much thought " well sod them if they can’t be bothered to ring me I can’t be bothered to keep taking taking this ****ing awful drug " - this was just less than 5 months after starting it. Aside from trying taking it at night instead of morning which didn’t help much I didn’t explore the alternatives like different brands ( didn’t even know there could be a difference due to brand ) or drugs. I already knew Tamoxifen was not suitable for me due to my medical history.
Later I spent quite a bit of time second guessing myself and stressing out about it so I ended up going over it with one of the BCNs in the breast clinic - it did help that the breast team were on board with me stopping . The Oncologist had discharged me by this time though I don’t believe she would have been onboard with it . I’m more or less ok with it now but every so often I still wonder if it was the right thing to do and had my cancer been more advanced / of a different type or spread to the lymph nodes I would have tried to persist with it.
Earlier this year when I applied for holiday insurance I was asked if I had refused any treatment for my cancer I was able to say with a clear conscience that although I had stopped this medication I had done so with the permission of my Consultant - not sure if the premium would have been higher had I said I had refused it.
If you are seriously thinking of stopping then I would advise sitting down with your BCN and going over the options - when you have your Dexa results back obviously . Unfortunately with BC there’s a lot of decisions you have to make and they’re all scary and it’s hard to know until later whether you made the right one but this isn’t one to make lightly .
With love xx
Incidentally did you mean to post in the hormone therapy section as your post has come into the radiotherapy section. Xx
@mitch1 if you are to give up Letrozole please discuss it first with your oncologist or BC nurse. Yes, the NHS tends to follow the NICE recommendations fairly rigidly, which means that if you have an er+ tumour, you will be given endocrine treatment as a matter of course but your MDT should also have an opinion on how important it is for you based on your stage, grade, Allred score, Oncotype score (if you had one - it predominately looks at benefit of chemo but also gives an indication of likely metastatic spread), your age and any other serious comorbidities that you have. You need to understand what the impact to you would be if you gave it up. Generally, this is calculated by the NPI score which you should have been given when the tumour was taken out and tested and your Predict score. I am certainly not saying that you shouldn’t give it up because quality of life is phenomenally important but you need to know the risks if you do. It’s the only way to take an informed decision. I have been taking Letrozole for two years (out of five) but do not have the joint pain that you are experiencing. I have had other side effects however and some, like vaginal dryness and insomnia, disappeared within the first six months. All of the most recent studies suggest that Letrozole is the gold standard of AIs but it isn’t easily tolerated by everyone so you could ask to try Exemestane (slightly different AI) or Tamoxifen instead. Honestly, I know how hard it is to think of taking this strong drug for five or ten years when the pain is relentless. There are plenty of women on here who have taken the decision to risk recurrence rather than endure it but please just discuss how big a gamble it would be before taking the decision.
For dry eyes - ask to be referred to the ophthalmologist of the hospital to check this out. Eye drops may need to be prescribed and they really help. Very soothing.
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They sent me to an ophthalmologist and I was told to use refresh eye drops 4-5 times a day. It does help. I’ve been on letrozole since January 2024.
Hi I’ve been on letrozole 18 months now. I had and excellent bone density scan, but then i’d been taking and continue to take Calcium Magnesium tablets [200mg to 100mg - correct ratio], Glucosamine combo - Glucosamine, chrondroitin and MSM, plus Vitamin D3. The hospital offered me Adcal - but when the company failed to send me sufficent food allergy details ie fruit flavours i chose to be safe rather than have a reaction, but their levels are way too low. I get all but the D3 from Hellenia or Lifesource.
I get D3 at 5000 iu from my local health shop, again because the dose is higher and has served me well for over 20 years.
When i was kicked by a horse in the shin, it didn’t break. according to A + e this was because of the supplements which had supported me. I get dry eyes but then i suffer hay fever and work ina dusty envirronment. Normal Eye drops help, used on those dusty days.
Letrozole hasn’t constipated me, nor given me hot flushes when i was only on them, following local surgery when i had to curtain my verzenios. just restarted again monday. DOnt be too hasty, results are sadly taking longer at the moment, the NHs is under alot of pressure. If you read some of the other scripts about tamoxifen, you may agree to stay put. good luck, Love and hugs Moonsox xxx