Looking for good stories about AA (Afinitor and Aromasin )

Nkb

Hello-

I have progressed on Ibrance/Faslodex and my MO's first choice for the next treatment is AA.

I have read of many people suffering terribly on these drugs and not particularly helping them. My MO says that is because only people who struggle with the drugs talk about them. Many people talk about how good their lives are on Ibrance- so I wonder if I just missed the good stories.

Thank you

jobur

Nkb - My MO says the same thing, ha ha!  So far my experience is limited to 1 1/2 months of aromasin and three weeks of Afinitor, but so far, so good. There were definitely se's when I started each drug, but nothing too bad, and my body seems to be adjusting to A/A already.  I think I had more se's when I started Ibrance.

Hope I'm not jinxing myself by writing this. 

pajim

Nkb, in general I agree with your onc. The people who have trouble speak louder than the people who are doing fine. Even on this site where we all share how we're doing. It's like the folks who are doing well don't want to invalidate the feelings/experiences of those having problems. We don't want to say "oh this is easy' because it's not easy for all.

That said: I did A/A with Ibrance. It was a dose-finding trial. The whole thing was easy peasy for the first two months. Then the problems started. After the third month I was pulled from the study because of pneumonitis (lung inflammation -- I got short of breath).

It could have been the Ibrance, or simply that the combination was too much. So far as we know I had no progression. Stable or better disease.

I recommend the magic mouthwash they give you for the mouth sores. I found that the mouth sores came and went. The mouthwash is disgusting but works like a charm if you're having trouble eating (me last weekend. . .)

Give it a try. If it's horrible you can stop. If it's easy you'll do just fine. Best of luck!!