Can I Breathe Now? t-MDS

[Darice]

I kind of keep holding my breath wondering what's going to happen next . . . and we've had plenty of problems . . . but my hubby's blood counts seem to be holding their own pretty well (he'll never be normal, of course) with just a Neulasta injection every two weeks. I can't quite get comfortable with this because I know that the treatment-related MDS is harder to treat, has a poorer prognosis, and that the chromosome 7 involvement makes things more difficult . . . it's like I'm waiting for the next shoe to fall, but I'm sure not going to look a gift horse in the mouth. I just don't know whether I can relax. Is there something I should be watching for or doing differently? I know that statistics are always behind the times, but we aren't benefitting from any new-fangled treatment . . . just good old-fashioned Neulasta. Guess I should just be thankful it's working.

[Neil Cuadra]

Darice,

I'm glad Jens' counts are staying OK. Sometimes you have to take what you can get and run with it. You can't avoid the thought that MDS is hanging over you, but do what you like to do and enjoy yourselves.

You mention new-fangled treatments, so one thing you can do is to search for clinical trials, either on your own at ClinicalTrials.gov or by asking the doctors or someone else at the treatment center about what trials might be available. Each trial accepts only patients who meet their specific criteria (age, disease type/subtype, health condition, past treatments, etc.) and you might not find one that sounds worth a try, but you won't know unless you look or ask.

You can watch a presentation about Clinical Trials using a link on the AA&MDSIF's Clinical Trials page.