Exemestane anyone??

Hey....interested in what made you change drugs....I’m currently on letrozole....at what point did you feel it was it ‘bad’ enough to try and change drugs....

I can’t work out why I am achy....is it residual chemo?, Zoledex ovary suppression, or letrozole? No one seems to be able to tell me why I have these symptoms and what has caused them....Baffled....

Hi there,

Obviously can't speak about your aches as could be different, but I took a long time before agreeing to the drugs because of the well advertised side effects.  I was prepared to give it a fair go and try it for 3 months.  However on talking to the oncologist today , she said to stop and try a different product.  I have been warned it will likely have similar side effects, but it was worth the change she thought.  It is because the letrozole or similar is doing its job in removing the oestrogen and I think in easy terms is taking away all the lubrication in the joints.  I could go all day with just an ache overall, usually clocking up 7-8 miles in a day, but as soon as tea time came it started to kick in more and I can hardly move.  The knees just seize up and I can hardly even stand up.  In a way its also feels as though I have lost the understanding as how to even follow the process through.  I can still recall my dad talking to himself urging his legs to work.  However he is 97 not 67!!  I also felt I had lost some of the sensation on the tips of my fingers i.e. if you needed to pick up a pin, but she thought that was more likely to be the chemo.

Hope it goes well for you and keep in touch.  If this new one doesn't work, likely would be back to the letrozole.  Maybe better the devil you know!!

xxx

Hi wendymum

As I've said before I took tamoxifen 13 years ago. At the end of five years I had a melt down. Before going back to work I had to have a medical. I had a bad time with pain in my joints. The doc said it was the drug causing my joints to dry out.

Now I'm on letrozole and the same pain is back.Awake now because of pain in my hands and feet. Two trigger fingers starting in my right hand

So sorry to hear you had pneumonia which damaged your kidneys. Its hard enough without the complications. I also have complications with infection and radiotherapy damage and lymphoedema in breast and antibiotics prescribed for the next year, while getting a little MLD which is hard to get appointments for. I hope your physio goes well.  

x

Hi Galligirl,

It could well be the Letrozole causing your aching joints, it causes Arthralgia, which is aching joints. Don't know about after effects of Chemo on joints as I didn't have it.  I'm on Femara, was previously on Letrozole, my fingers are so painful, I would never have believed you could get such pain in your fingers, my knees and feet are also painful but to a lesser degree.

My GP does believe it's the Hormone treatment but I feel I must preserve with them.

Best Wishes. 

I am on exemestane and monthly zoladex implants. Never been on anything else and oncologist said exemestane is better for.someone young like me ?! Anyway  I get horrid side effects from hot flushes etc. Also getting pain in my hip, just one side. Oncologist not bothered but GP is and she is going to get me an MRI. One thing I do u ld say is my hip pain goes after 10 mins of walk I g but always hurts after sitting still for a while..

We are all different and on different meds so sometimes it's worth trying a few before you find one that works for you. Also have you tried the same drug but from different manufacturers 

thanks for your input,and the other responders,  and I think it is getting obvious that all these types of drugs have a similar effect on the joints.  I am off everything now for 2 weeks so when I start the exemestane it will be a fair trial.  I thought pains would reduce and I would be 'normal' for that time, however into 3rd day of no pills and pains in joints actually worse.  Been affected today with neck pain that wasn't even there before, and knees worse than ever.   Herceptin on Thursday so will hopefully be feeling better by then and not be wincing on every step.  Going by oncologist's recommendations so will have to bow to her expert knowledge at the moment.  Feel as though we all know a wee bit about how all these things work, but the whole picture is not so clear and many of us are clutching at straws.