View Single Post
  #4  
Old Thu Feb 24, 2011, 11:27 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Mad Mom,

Based on what I've read and what other patients have said, your daughter's progress sounds quite positive to me. I don't think your daughter's doctor will say that this is a sign of relapse or failure of ATG.

Platelets are often the last count to rise after ATG, in part because the cyclosporine is keeping them depressed. It's one of the normal cyclosporine side effects. As long as other cyclosporine side effects aren't causing problems for your daughter, you don't want to rush into tapering because if you taper too soon or too quickly her counts can crash and set you back many months. It takes a lot of patience because some doctors want patients to wait 6 months (like her doctor) or even 12 months, before starting the taper. In the meantime, platelets of 60 to 70 are quite livable. Caution about avoiding hard bumps, bruises, or bleeding would make sense. For example you should talk to the doctor before your daughter plays sports and contact the doctor if she gets a nosebleed that won't stop, unusually heavy menstruation, or large bruises.

As patients and caregivers all of us have lived with that fear of an unknown prognosis but I hope you won't let the worst possible outcome dominate your thinking. I think your daughter's progress is very promising and that being transfusion-free and having almost all counts in the normal range is a very good outcome at 4 and a half months. Last year your daughter was in pain, in the hospital, and had life-threatening counts. Now she's out of immediate danger and can live her life mostly normally. That's a huge improvement.

If you talk to other patients, here at Marrowforums or elsewhere, I think you'll find that you and your family have good reasons to be optimistic about the coming months.
Reply With Quote