Quote:
Originally Posted by Tracy Spurlock
Hope to attend the April 20th conference in Houston. Nine year old Grandson was diagnosed with SAA August 23rd, 2012. Has had ATG/Horse treatment in August and then cyclosporine and prednisone treatment, in differing doses, since. His RBC and WBC have not been a big concern. His platelets seem to be the Dr's biggest concern. Lowest count was 20,000 when admitted to hospital & have jumped all over with the highest count being 48,000 and then dropping, in a weeks time, after the cyclosporine was stopped. I'm stymied and don't even know what questions to ask. My understanding is that with treatment, he will never be "cured", only go into remission & that the only "cure" is with a BMT. Is this correct?  |
Tracy,
You are correct about remission vs. a cure. When doctors weigh the choices of immunosuppressive therapy (IST) vs. a transplant, they are most likely to favor a transplant for children with a matched sibling donor. In other cases they may recommend IST. It's a tradeoff. A transplant may make sense because kids have so much of their lives ahead of them, but that has to be balanced against the short-term and long-term risks of a transplant. The good news is that both IST and transplants have a good rate of success for pediatric patients.
I recommend that you include two questions in your list:
- What schedule makes sense for tapering cyclosporine after ATG?
- Under what circumstances, from this point on, would a transplant be indicated?
It would be ideal if you knew your grandson's doctor's answers to these questions and could attend the conference to see what else you can learn about it. You can't expect a doctor at the conference to make a fully-informed recommendation about an individual case, but they often give advice about what their own approach would be and what factors help them weigh the choices.