We’re so sorry to hear what you’re going through @hiker50 - please know that we’re always here if you need someone to talk to, our nurses are just a phone call away on 0808 800 6000 and can be a listening ear about anything.
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Thank you so much for posting this. I’ve been suffering since February with excruciating joint pain, I’m 47 and feel 87! Haven’t been able to go back to work yet either and it’s so frustrating.
Having read you post and replies I’ve discovered that I’m on Accord and didn’t know that there were different brands! I’ve just sent a message to my doctors requesting a change of brand x
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I’ve tried for help from various counselling services etc but got pushed away / referred back to GP. I’ve given up asking for help. GP is lovely, but a call once a month but no referrals & being told services can’t help me means I’ve given up asking for help.
I’m on my own / a lost cause now.
Thank you for msg though xx
Hello
I am 58, diagnosed 2 years ago. I will have been taking Letzoral for 2 years in September. Oncologist recommended to tolerate for 5 years and ideally take it for 10.
My joints are horrific and it seems to fluctuate from thumb joints to wrists to ankle to knees.
I work in secondary school and have always been active I walk a lot and the last 18 months swim twice a week. Can highly recommend Aqua. Have always been given Accord brand but recently noticed had Cipia and Amarax with I thought massively improved my joints. The GP said it’s the pharmacist decision not his has too what brand is given. I also have just had 4/6 Zomate acid infusion with various side affects. Plus 2 turmeric a day.
I come down stairs two at a time first thing and struggle to get up off the sofa at times. Can’t get out of the bath anymore.
But on the plus side completed the Arla Great North Swim on Windermere 250m, then 1/2 mile swim at Durham.
The wet suit is a work in progress, my shoulder doesn’t like it.
The icing on the cake last week my daughter and I climbed Blencathra in the Lake District. Up was fine amid lots of huffing and puffing but my knees weren’t happy coming down.
Determination and stubbornness got me to the summit x
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This is exactly it!! I’m the same….hobble slowly out of bed, struggle to stand up but yet attending classes and walk 15k steps a day. Seems keeping moving is the answer……it’s when we stop the pain comes.
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Glad it’s not just me. X
Hi I’m sorry to hear your issues with Letrozole. I’ve been on it since September 2024, and was also on Ambimocliclib (?) but had all the gut issues and was switched to Ribociclib which is better. I haven’t noticed many additional side effects I can pin down just to letrozole and whilst I no longer can tolerate really hot weather, I have been able to cope with the fatigue and other side effects I’ve experienced. I’ve had 2 brands from the Pharmacy - Sun Pharmceutical and Amarox currently. I have noticed my hair falling out again but that could also be due to no longer being on HRT. I’m missing the cold cap treatment in this heat though!!
No one will advocate for you as well as yourself. Continue to press your GP for information and a change of brand / drug. GP’s are able to specify a particular brand of any medication on their prescription to the pharmacist. What is difficult at present is obtaining the full range of medicines since leaving the EU and the cost / availability of drugs under the NHS with its funding issues. All of this in no way should stop your GP / Oncologist reviewing your medications and making changes as they see fit - IN DISCUSSION WITH YOU!!! (apologies for “shouting”, but this is really important for you to bear in mind. They work in your best interests and should be confident enough in their ability to admit when they don’t know something and should be able to find out or refer you to an expert. Doctors are not omnipotent beings, I know I was at university with a medical school and know how many medical students you can fit in a Mini car - as some of them tried it. You are able to make an appointment with another GP in your practice who may have more of a specialism in this area, although your regular GP should be consulting with them themselves. Stick up for yourself, don’t give in, and remember you can always change your GP if they are being unhelpful, unwilling to discuss with you or just fed up with you and wishing you’d go away. They usually are the weaker doctors! Good luck.
Definitely don’t suffer in silence - there do seem to be alternatives but you have to ask. I’ve found out so much but I’ve been the one initiating the discussion!!!
I started on Letrozole- insomnia, furious hot flashes, nausea etc - came off it - symptoms went. Tried Tamoxifen- same - actually passed out twice when having a hot flash with nausea- came off it - symptoms went.
Now going to try Anastazole - oncologist doubts I’ll tolerate it but third time lucky and all that and at least I would have tried. He’s very much on the side of quality of life and with those symptoms come cancer triggers like stress, poor sleep, etc so it a way the medication becomes counter productive.
BUT everyone’s cancer is different- this is only my experience but thought I’d share.
Sending love to you all out there trying to navigate this all xx
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Sorry meant to say I tried the meds for 2 months each - had mastectomy and complete node clearance end of Feb.
I am 72 and after lumpectomy I was put on Letrozole. Only med option for me. I have been on it since May 2024. I had immediate and significant weight gain, definite increase in muscle and joint pain. So much worse than it ever was. That also doesn’t help when I attempt regular exercise. I am experiencing hot flashes again and also noticing some hair thinning. Fun! I’ve been handling all of this, but the past two weeks. I am noticing edema in my legs and fluid buildup around my ankles. It eases up overnight because my legs are elevated, but it happens every day. I’ve started doing compression socks. I wore them years ago for varicose veins, but stopped regular use and just use them for airplane travel, and times when my legs just felt very tired. I am just wondering if anyone else has experienced edema with letrozole. I know some people have had no effects on the medication, but I seem to be having All of the side effects. I’ve seen many of you have talked about the different manufacturer. How do you find out which manufacturer your prescription is?
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So sorry to hear you are having to manage all of this.
Have a look at your box of Letrozole - manufacturers name will be on that - could be Crescent, Amarox, Sun Pharma or others, the original Letrozole was made by Femara. Hope this helps and good luck xxx
Your GP can write a specific brand on the prescription if you find one that suits you that way the pharmacy can order this specifically for you.
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Thank I asked DR that and was told it’s up to the pharmacy. They were really helpful and added the brand to my details to collect next time.
That’s really naughty of the GP, I am a senior medical receptionist and know that the GP CAN write it on the prescription,but if the pharmacy has sorted it for you then fab x
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