Letrozole side effects - suffering badly. Can't cope

[Anniej]

Wildypuss, you are certainly having a time of it. Sending a gentle hug. I've just recently started Letrozole-3months - and find my night sweats much worse on Accord brand than Teva. So it might be worth checking out brands. Everyone is different, and lots of ladies do like the Accord brand.

i started Ibrance last week and the first 48 hours were an absolute nightmare. I was ready to give up then. BUT, I decided to split my meds. I take my Letrozole at night so I sleep through as many side effects as possible, and I switched my Ibrance to morning. I'm a much happier bunny, coping really well at the moment. Lots of walks in the fresh air to keep me cool, and pints of cold water to drink. Some ladies recommend the Ladymagnet to reduce the sweats. I've taken up drinking Sage tea as well. Needs a slice of lemon in it, otherwise a bit grassy, but three cups a day helps keep the sweats away. I was given Amitrypaline to help me sleep when I was first diagnosed with Fibromyalgia some years ago. Don't take it now. I didn't know it has pain relief properties. I use ibroprufin and Clarityn for joint pain when necessary. Fortunately not every day - yet!

Good luck, girl, and do keep trying. 🍀 X

[Carolyn52]

Hello wildy puss
I'm so sorry u are struggling so much with se...it's bad enough having secondary bc. Sometimes I think the treatment is worst than the illness! !
I think I read on another thread about a lady magnet you can buy from boots which does help some ladies with the sweats ..it's hard to believe that little letrozole pill we pop everyday can cause so much misery !
I find I'm very hot or very cold ..never just right. I expect you have but have u tried feather or wool duvet, putting lots of cream ( any will do) on your feet before bedtime and keeping wet wipes beside your bed to mop yourself !!
I'm much older and I think maybe I'm not so effected as you younger ladies as this has hit you on the cusp of the change anyway and you already had galloping hormones without all this extra !
Hugs xxx

[Wildypuss]

Hi Carolyn. 

Thank you for your reply. I can't remember what brand of Letrozole i started on, though I think it may have been Accord. I have a variety of packs given to me, with different brands. For 2 nights I have tried Glenmark with no difference to the sweats. I also have Dr. Reddys and Cipla packs. I read a lot about women suffering bad joint pain on Cipla brand. I am desperate for anything that will work quickly. It's preventing me returning to work and enjoying life. My patience has run out and i'm not coping.

Off to see my GP later today.

x    

[Carolyn52]

Hello wildypuss
Hello and welcome to the forum where we are all really ladies that understand how you are feeling.
I have been taking letrozole for 2 years and have had a few side effects which I have learnt to overcome.
Sometimes it's the brand of letrozole that causes problems ..I was given "cipra" brand and felt terrible on it. I now insist on "accord" every month.
As you are lucky to get palbocicib (ibrance) I think it has to be used in conjunction with only letrozole. .this new drug is very limited on NHS at the moment but is producing some very good results in US where it has been available for several years.
Sometimes it takes a while for drugs to settle down with side effects ...
Hugs xxx

[Wildypuss]

Hi. In short, ive had BC twice, both ER+, HER2-, and told in May its spread to liver, spleen, peritoenuem, all up spine, all ribs, both femurs, pelvis, lymph under arm, and skin mets. Prognosis 2-3 years. Im 50. Treatment is oophorectomy (cancer also found in ovaries & tubes), Lertrozole, Palbociclib trial drug, Zometa.

Its hard enough coping with the DX but im suffering so much with the SE from the Letrozole. It's so bad im considering stopping it and trying another AI.

Over the last 4 months the night sweats and hot flushes, and teeth chattering cold shivers have been debilitating and are getting worse. Changing nightwear 3 times a night, towels on the bed, nausea, embarrassing soaked clothes. I had a meltdown recently, screaming and crying "make it stop."

GP tried me on Sertraline, didnt work after 28 days. Now 10 days in on Clonidine but no improvement at all. Please can anyone suggest alternative treatment for sweats? Should i switch AI? Should i be more patient?

My meds are currently paracetmol, Amatriptylene (for pain relief), Letrozole, Palbociclib, Clonidine, and medicinal cannabis oil.

Help!