Welcome to Cancer Chat Elasticgirl although I'm sorry to read what's troubling you.

We have a lot of members who are/have been on Letrozole so hopefully you'll hear back from those who have experienced this soon but you're more than welcome to discuss oestrogen testing with our cancer nurses. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I hope you're able to get the answers and reassurance you're seeking about this soon Elasticgirl.

Kind regards, 

Steph, Cancer Chat Moderator

I had 2 different types of tumour simultaneously in one breast, so lumpectomy and reconstruction followed by chemo, radiotherapy and a year's herceptin for one, and 10 years letrozole for the other. I finished the herceptin in January, and the side  have be effects of that and chemo are now getting under control. Meanwhile I've been on letrozole for almost a year.

I found it hard to know what side effects were left over from chemo and which are solely due to letrozole. However, hot flushes were obviously letrozole and so was itch, hair thinning and night time pains in shoulders and hips, whichever side I was laying on. I was beginning to feel that these effects were beginning to subside, and hoped that this was the body getting used to the abuse and not just the winter weather!

But I've just discovered that all letrozole is not created equal. I'm only given 28days worth at a time, and recently began a new box. Am wearing just a tee shirt in unheated house, but break into a dizzy sweat as soon as I move. Itchy in the extreme, feet burning and toe nails threatening to part from toes, and generally feeling worse I had been since chemo days.

I checked the letrozole box, thinking I could possibly have been given a stronger one in error. What I discovered was that the last lot I'd been given was same drug, same strength but a different brand. I found it hard to believe that there could be that much difference between brands, but spent most of this afternoon searching the net, and found a lot of others he'd found big difference between brands.

Personally I had been getting on well with Teva, and it is Sun pharm that I have just been given that are making me feel so rough. But reading the forums it seems to be a very personal thing. Some people are doing well on a brand that others can't cope with. The only thing I can suggest is that you ask to try a different brand. The difference between the two I had was very apparent, very quickly. I hadn't expected to notice a difference but within 3 or 4 days it was very obvious. Hot flushes went from 2 a week to 6+ a day! Couldn't sleep for pain. Toes red swollen and painful.

Lastly, when you do find the brand that agrees with you.... If you take prescription to chemist then ask doctor to actually write the brand name on the prescription, because the chemist is not bound to give you a particular brand otherwise.

Good luck to you now and always. Elaine

X

Incidentally, the idea of oestrogen testing sounds fantastic! Will spend the rest of the evening trying to find out about it! Elaine