I meant Ca135 test)(I think!) - I haven’t been offered this test but maybe that’s because I have not been diagnosed with secondary breast cancer…
Seagulls
Hi Seagulls! we are the same age :>))
My 7mm lump! yes only 7 mm-grade 2 cancerous lump (which I still can’t find! and I’m not exactly over weight so one would think it should easily be found) has spread to my bones. It’s now stage 4 terminal cancer.
Apologies for getting the name wrong, I will amend it in a second. It should read CA 15-3 LEVEL, BLOOD CA153…and it stands for Cancer Agent, but double check please? Yes, it’s a real booster to know how well I’m doing…keep thinking positive stuff and manifest great things to happen…
1 Like
Hi all, I have been taking Letrozole now for just over 18 months.
2.5mg.
Have taken all three. Sun Pharma, Accord and Amorox. Accord seems to be the usual one though if it is in stock at my pharmacy. I find Accord is probably the best one I take. I had a lot of hot flushes and night sweats at the beginning, but they have settled down now. The aching joints though have continued. But then I am B12 deficient, so I get the aching joints through that as well. Have noticed my hair is a lot dryer to touch, and my hairdresser has commented on that. But no hair loss, which is great. Also my nails do not grow as much as they used too, and break easily now.
I take the tablet at around 9pm every day. I find it easier to cope with any side effects that way. But I would rather be on Letrozole than not. Hope you are all coping ok xx
3 Likes
@ecl have you reported the tinnitus on MHRA yellow card? It would be massively helpful if you could as this isn’t a recognised side-effect https://yellowcard.mhra.gov.uk
Brand - have had Sun, currently on Amarox and next box is Accord
2.5mg
Yes to side-effects, initially hair loss and nausea (Resolved after 8 weeks), continuing joint pain (especially hands and feet), tinnitus and dry sinuses
If anyone has side effects that aren’t listed on the drug information leaflet please report on MHRA Yellowcard scheme - you can help others
1 year
Morning before breakfast
1 Like
Hi Silver6
As your survey has been going for over 3 years now, are you actually still needing contributions? I would be happy to contribute and have read many of the posts with interest since starting Letrozole 2 months ago and experiencing some side effects.
If, indeed, you have collated the information could you please let us know where to access the outcomes of your survey.
If, though, this continues as an open post it still is a useful source of information regarding people’s experiences of Letrozole and I would wholeheartedly wish to thank you for it.
2 Likes
I agree. Would be good to cut and paste responses into chat GPT and see if there was some commonality across brands and side effects.
Has anyone done collated the information?
Due to this thread I moved on to Femara as it seemed to have less severe side effects from the comments.
The joint pain in my hands is not improving. I am having physio for back and surgery scars and acupuncture to try help with the joint pain.
Has anyone tried a tens machine or pen for joint pain?
Fatigue continues but not sure if that is medication or lack of sleep because of pain.
I would come off Letrozole in a heart beat if I knew it was having little effect or if there was an alternative. I never expected to feel this bad on endocrine therapy
2 Likes
United Kingdom
Femera works best for me
And my best means I have some good days
Main issues:
Severe insomnia (usually after ovarian suppression injection)
Joint pain (crippling some days)
Fatigue
I asked my onco if I could have a break & he kindly shut it down
He didn’t recommend it so early into my treatment and guess after doing chemo & radio I need to white knuckle it a bit longer
I agree - this is a lot tougher than I expected
What physio are you having? X
2 Likes
I would love a break too. There is a recent study showing the impact if you take breaks less than 30 days - can’t remember what it’s called. Try Dr Teplinsky on Instagram
Physio is for scar tissue and shoulder and back pain. Hands are a mess.
Yes my hands are awful
At 50 I feel 90!
May ask again for a break when I see them in June
Xx
2 Likes
This thread has been fascinating- thank you.
I’ve been on Letrozole for 2 months - Amarox
Side effects - fatigue- nausea- light headedness - hot flushes / and really stiff fingers immediately after I take the tablet which is quite alarming.
I have started taking it last thing at night - so can sleep through the nausea - I do wake up - but much better than having the side effects during the day.
A collation of these responses would be really helpful.
Thank you everyone 🩷
1 Like
Can I ask what problems you have with your shoulders?
My doc just switched me from Letrozole to Tamoxifen: severe stiffness backs of legs and hands, swelling ankles, stinking armpits.
Is it ok to switch overnight? Take a short break in between?
(Aug 23 left side mastectomy, previously fit 76yr old)
1 Like
Hi @geehh It’s always advisable to check with your own BC nurse but anecdotal evidence on the forum does suggest that some people who swap from one endocrine treatment to another get given a couple of weeks grace to get the old one out of the system. I have always been on Letrozole and don’t want to change but have been given a six week holiday by my BCN to gauge impact on side effects (all my SE disappeared on the holiday). But as I say, a quick phone call to your nurse should clear up how long they would give you to clear the AI out of your system.
1 Like
Thank you. My doctor, having heard my list of possible side-effects, said, let’s switch you from Letrozole to Tamoxifen: your tumours weren’t particularly aggressive and I think anyway Tamoxifen is better”. I’ll ask her if an interval is sensible. Didn’t think about it at the time.
1 Like
Yes
2.5mg
Sun Pharma
3 months
No side effects - really haven’t noticed anything
Take after evening meal .
1 Like
Hi, I am of similar age and have another 5 years of letrozole as well. I have joint pain, especially in the knees but am wondering if you’ve had any dizziness.
Not so far but I do get sudden hot flushes and feel I have to take clothing off. I was getting stabbing pains in my legs when I suddenly remembered I had to meet someone up the road in 5 minutes and it was 15 minutes up hill away!
I ran so fast when I got there almost half dead. Earlier this week I had an infusion of zoledronic acid in London. Anyway the run cured all the pains! I am 70 on 3 August if I live that long.
Seagulls
2 Likes
Yes the hot flashes and sweats are uncomfortable, also the knee joint pain. 
1 Like