Letrozole brand poll

hi,

good luck if you can try Teva but it isn't a panacea. I am on it and wake up with claw hands, quite painful, and stiff all over.( I think Femera is the only really kind version.)...but.it is worth a try. After 2 years on Letrozole I think a lot of the side effects is the oestrogen loss from our bodies... I would go back on HRT tomorrow if I didn't know that the cancer would be delighted.  

p.s. Really sorry if this sounds a bit defeatist but have been two days just sitting and wasting time on the Ocado site. After getting to "it's your turn" and waiting seven hours it's impossible to get a delivery booked.  Shouldn't complain because others much much worse off . Just warning others that it is pretty well a waste of time. Does anyone know another on line which isn't as bad.  lots of love  Stay safe.

Londonmumof2

Hi, promised I'd get back to you....

So far taken 2 brands, took Cipla for 2 weeks and felt the worst (so far!) on this one, really struggled to walk when getting out of bed due to stiffness.

Now, and for the past month or so, on Accord, less stiff (vs cipla) first thing and have noticed that LHS ankle joint very painful as well as LHS shoulder joint - odd but they improve when I do warm up exercises.  I also feel really tired and achey in legs especially when I've walked for over an hour or so...I end up shuffling like an old lady! Also find it a challenge to get off the sofa re joints/muscles.

All annoying but manageable ( I think!).

Hope your side effects are getting more manageable.

Sam

Hi Sam, thanks for the  update. That's interesting what you ate saying about your legs.  Mine were swollen on Accord to the point that thr skin on  my knees pulled when I bent them.  I had a serious issue with my eye (posterior retinal detachment) which Moorfields think may br linked,  but I can't see them for a follow up until the virus crisis is over unless it becomes worse then it's a taxi to their A&! I am waiting for my eye to  heal before giving it another go. I still get the odd flashing in it,  and have the remains of the blood clot swishing around,  but it had reduced.  

I'm seriously thinking of buying a pack of Femara to try it out so that I know I'd is worth it,  and take it every other day.  I need a source of the real one though as there are fakes out there! And I thought that it would improve after chemo! X

Hi Londonmumof2,

I'm on Femara so I can't help with Brands of Letrozole, when I was on Letrozole it seemed to be a different brand almost every month.

I was interested to note you had been itching, this week I've had awful itchty skin including my scalp, I wonder if it could be the meds. Regarding your joint pain, I believe some of us suffer more than others with it, I'm now having to come down the stairs side ways in the morning as it is easier due to my aching bones and feet, it eases off during the day, my hands are the worst and are unbelievably sore and knobbly. 

I've read Black Cohosh can be taken safely with AI's, I'm going to try it, I read it tonight on an American Resource Guide for Oncologists so reliable information. 

Are you still being investigated for your eyes?

Best Wishes. 

Everything is on hold until after the coronavirus pandemic is over.  I'm off letrozole at the moment, but will restart it on a tablet energy other day in a couple of weeks when my eye is a bit better and the  flashing stops. If I still have issues them my oncologist has asked my doctor to change me to another AI. 

Interesting to  read about black cohosh. I took it many years ago.  I've  tried a few supplements with the letrizole, and just bought bitter cherry,  which is used a lot by women in the US so will give it a go first.  

It sounds like even Femara has similar effects,  if you have thr pain and swelling.  Before I stopped the letrozole I was literally gripping into furniture when I got up in the morning, my joints clicking, and felt like my 99 year old uncle! That was on 3 months medication so God  help me!

Apparently for some things improved in time,  but my ankle is still clicking,  and my legs still swollen.  I feel so much better off it, but will go back on.  I'm just enjoying thr unexpected holiday!

Hi peterawake and Londonmumof2, please double check with your BCN or oncologist about black cohosh as I was told specifically by my onc (in the UK) NOT to take it with ER+ breast cancer. 

Londonmum

I was put on to letrozole., then turned into a crippled old lady with mush for a brain. It was suggested by a BC nurse that I have a break. Before I went back on it I asked what difference it would make to a reoccurance.

This is my second bite of the BC cherry. The first time I was given tamoxifen and told it made a 17% difference to survival.

This time it makes 2% difference after 5 years and 1% difference after 10. Each time I've had a small lumpectomy and radiotherapy. To me I d rather do that again than live a half life in pain and distress for the sake of so little difference.

Now, we are all different and the risks do vary but for me I had to ask the question. To be honest I think I should have been told before I started it. So please ask the question. Then you can make the choice. 

Sending hugs. And a cool breeze.

Hi Londonmumof2,

Yes, the Femara still gives the side effects, or is it the lack of Oestrogen that causes the problems. The only thing I can be sure of is the Femara is the same each month and not a different brand every month.  I remember my GP saying both Femara and Letrozole are the same but, are they?

Quite honestly, if I'd had Chemo and a smaller tumour I would stop the AI's but, I'm too scared too in case their are lurking cancer cells.