I’m right there with you. My dad also had NHL about 10-11 years ago. He had CHOP and was in remission for almost 4 years. When it came back he had an autologous stem cell transplant.
It came back a few years later. He tried Rituxan and he had a good response. Then, a year and a half after he had his last treatment, his counts went down (anemic mostly) and they diagnosed him with secondary MDS.
They first thought that they would do a donor transplant but now they say it would kill him. So, he’s pretty much in maintenance. He tried some chemo (Vidaza) but his counts had a hard time responding and he keeps getting infections so he can’t get more treatments until they’re clear. They want to be able to try Revlimid but it’s not approved yet. We hope he can make it until then.
Right now, he doesn’t seem to have any NHL that’s complicating the MDS. He’s just really sick in the hospital (over a month now).
Anyway, we’re kind of in the same boat. He’s 55 (his 55th birthday is next month).
I hope you’re near a center of excellence and that he’s being treated there.
Take care,
Carrie
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