[paulaespada]

Originally Posted by Lisa V

Paula, I'm sorry that Jorge has had to have a second ATG. It sounds like he started to relapse shortly after the cyclosporine was stopped completely. That is fairly common, and I agree with the doctor that starting cyclo again without ATG would probably not have helped.

I can understand why both of you are worried and depressed, but the good news is that this gives the doctors a chance to learn from the first round of treatment, and hopefully improve on it this time. That was the case for my husband, who is still doing fine four and a half years after his second ATG (which was a year and a half after the first one). He relapsed after the taper too, so we learned that it is probably better not to taper him off completely.

Ken was getting Neupogen (similar to Neulasta but not as long lasting) with the first ATG, but they didn't give it to him with the second one. Looking back, I'm not sure he really needed it the first time because for him his WBCs were always the least affected line. My feeling at this point is that for severe neutropenia (neutrophils 500 or below) the benefits of getting it do outweigh the risks, but once they get above that it's best to be cautious. I've always wondered if that is what caused Ken to develop his trisomy 8 mutation. Of course it may have been there all along and we just didn't see it because the sample was so small. It's hard to know.

At any rate, even though it was terrifying at the time, I'm now almost glad Ken had to have a second ATG because he's doing so much better now than after his first one! Hopefully the same will be true for Jorge!

Lisa

Your post brought great hope for me and Jorge.
Yes, we must tell Jorge's doctor that if renal function if fine as it has always been, go on with ciclosporine is better.

Indeed I have no words to tell you how grateful I am for your post.

You helped us very much.

Can I ask you which cyclosporine dose is your husband on?

Blessings!