I'm in the 50% :P

crisw

Well, after less than 3 months of exemestane, I'm in the 50% of women who come off AIs due to side effects. Unlike many who have posted here, I have a very supportive oncologist, and he's actually the one who suggested I go off. I had DeQuervain's tenosynovitis, worsening of my existing carpal tunnel in my right wrist and incipient CT in my left wrist, extremely stiff and painful hands despite daily hand exercises, terrible stiffness any time I was still for more than a few moments, and knee and back pain. (And yes, I had tons of exercise- walking an average of 8500 steps a day, aquatic aerobics 2-3 times a week, 25-mile round-trip riding my bike to work 2-3 times a week, yoga once a week- I will say these helped a lot, though!) I don't think 5 years of this was tenable if the symptoms were that bad after just three months.

He's having me take a 6-week drug holiday, then most likely switching me to tamoxifen. I hope I tolerate that well! I didn't have much in the way of hot flashes during natural menopause or on the exemestane, so hopefully that won't start up.

MARIONSGIRL

I started Exemestane in March 2016 and the back pain started at the end of July. My oncologist gave me a two week reprieve and I felt great and then I started on Femara. The hot flashes were very bad on Exemestane so he prescribed Effexor which is great for calming them down. My back still aches and I have started physical therapy which helps some. My oncologist is saying 5 to 10 years for this. I'm 65 and can't imagine having back pain for that long!

farmerlucy

I'm glad you have such a responsive doc. I hope you find Tamoxifen easier. I sure do!

crisw

Just an update- I started tamoxifen in mid-December. So far, the only side effect I have that might be attributable to the tamoxifen is slight fatigue- yawning and a little tired, not affecting my activity level at all- so it's looking good!