Letrozole break update

Hi this is really interesting to read. I am on Letrozole began in May 2022. I felt quite lucky as I was given Sun Pharma brand and yes knees stiff if sitting too long and had some pain in remaining breast. I had this checked out and was told it was the Letrozole thinning my breast tissue 

Last couple of months I have had to change pharmacy as mine closed. I spent several afternoons ringing round to find a pharmacy which would supply Sun Pharma brand Letrozole. No joy and in spite my doctor stating this in my prescription I have had to change to Accord and even that is not easy to get.

I have had so much shoulder pain my left not surgery side I have a frozen shoulder been referred to hospital for injection in it but a 5 month wait. I am now getting wrist, back and knee pain too far worse than before. 

I am scared to stop taking the meds and am hoping it will ease but not seeming likely. I have 9 more years on this drug not sure I can stand it if nothing changes. 

I will ring the breast nurse for advice. 

Hope you improve why do we have to go through this after all that's gone before I feel like I have aged 10 years 

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I stopped taking Letrozole because for me life wasn't worth living with the side effects. I know many people cope with them or don't struggle at all. But for me the intense pain in bones and muscle just made it impossible. I moved to Tamoxifen and it made a big difference, I can't say it's free of side effects but after a period of transition it's doable.

Calling something a 'side effect' makes it sound like a really trivial thing we shouldn't complain about, I'd take that with a pinch of salt.

My joints are wrecked , I have issues with urinary incontinence and I feel so sad and worried the whole time.

I could be taking these drugs may make no difference to my chance of recurrence, so though it's easy to look at data and say this is the right treatment we're people not data.

Whatever everybody's choices I hope you all feel informed and supported in the decisions you make.

I had my one year mammogram today and was cornered by a young happy puppy doing research into compliance on post surgery meds.  It's  a sample size of 45 and I can already see it's meaningless. Just because you order and pick up a script doesn't mean you take the meds. Honestly , what a waste of time and energy. Poorly designed research is less than useless.

I've moved onto Tamoxifen, after 3 mths of Letrozole. I have osteoporosis and didn't want to have to take statins. My GP Automatically prescribed them, wasnt worried about my cholesterol before. 

I am putting up with it, I think my joint do feel a bit better but it's early days. I didn't have chemo which makes me feel more inclined to cooperate. 

I took part in the research about understanding the explanation about the Oncotype DX test, I should have been given a leaflet, which I wasn't. It was also about  confidence in the result. I hope they were right that I didn't need chemo. Mind games. I just want to get on with living, finding out how to build up my stamina. 

So did I - went to my went to my own oncologist appointment with a black eye! I really am weighing up the pros and cons, I’m so bloody stiff, my movement isn’t as it was before, my flexibility gone,y joints creak. My weight increased by 3 kg and I fear the v  dryness will be another thing that will be a problem - I was a young 53, had a new partner was enjoying myself but this has changed everhing. And my mood swings oh boy

Oh dear not much fun. Did you have a fall? How did the appt go. Prof Simcock told me I haven't got osteoporisis even though Dexa scan says I do and have been on treatment for over 2 yrs. 

For me it's the tiredness, broken sleep and being slow. I try not to worry just hope with time things improve. Om not yet 6 mths after my surgery. I think it takes maybe 1 yr to adapt to the new way of life. 

Hi Eline, I have been taking letrozole for nearly a year now after a right mastectomy and chemo last january and suffer awfull with fatigue, achy joints and muscle pain, this has increased the last couple of weeks, the thought of taking it for another 4 years fills me with dread but am also concerned as it is keeping my oestrogen at bay, just wondered if you had a brand in mind. Like you didnt realise the compounds were different.

Oh lordy, was the transition ok I’m thinking of it as I’m struggling with my mobility and joint pain, I’ve lost all my flexibility. My dexa scan was normal but it’s in my family both my Nan and Aunty had it. I had my appointment last week and was told I should stick with it and exercise but i’m with you on tiredness 

No problems with the transition. I've tried to learn about the foods to avoid. I have reduced my cows milk always been a big fan. During training as a HV for breast feeding, the trainer said cows milk is for baby cows. I didn't pay that much heed at the time. Now I've traded half my milk intake for Almond milk unsweetened. Trying to keep the calories down but when tired or needing energy food is needed. 

How long does it take the boob to stop hurting post lumpectomy and radiation. 3 mths soon post radiotherapy, someone said it shouldn't still be hurting. I'm not sure? If it persists I'll get it checked. Reading on here about people having recurrences has made me cautious. 

I know what you mean lovely, every twinge I panic! I hate letrozole but am so terrified of reoccurrence but honestly couldn’t get up off the beach yesterday! I’m off work next week if you fancied meeting up ?