View Single Post
  #2  
Old Fri May 6, 2011, 12:49 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
You should certainly ask about the slow taper because continuing on cyclosporine is one choice, and you want to hear what they have to say about it.

Have the doctors suggested repeating ATG if cyclosporine doesn't maintain Shauna's counts? See Andrea Pecor's profile for one patient's experience with repeated ATG.

My wife and I faced the same decision that Shauna has. She too had stable counts. We too had a consultation at the Fred Hutchinson Center ("the Hutch"). They recommended a transplant, but we had to keep in mind that transplants are their speciality, so they might be more likely to favor that choice. That was the second opinion my wife got, and the first and third opinions at other treatment centers also recommended a transplant. Like Shauna my wife had no sibling match but a match unrelated donor had been identified.

However, your situation differs too. My wife had MDS, not AA, had not responded to ATG, and her chromosomes were apparently changing/unstable. We decided that the alternative to a transplant was "waiting for something bad to happen" and that it eventually would. We chose the transplant and that was the right choice for us.

You can't discount the immediate risks of the transplant procedure but you also have to weigh the long-term tradeoffs. Even with a successful transplant she might face graft-versus-host disease and other lasting side effects. You'd have to plan ahead for the fertility issue. On the other side, continued cyclosporine and possibly repeating ATG could carry Shauna for many years. The question is whether that would work for a lifetime, and whether the possibility of a relapse would be a constant burden for her. Making the decision harder is the fact that if she'll eventually have a transplant, the sooner it's done the better. If only one potential donor was identified then there's also the concern about that donor's long-term availability.

You can look at statistics on both sides but a big part of this decision is how Shauna herself feels about it. It's a very personal decision and she might not even have the same gut feeling that you her parents do.

The insurance issue has to be considered but Shauna may be able to get her own health insurance through an employer, especially if the restrictions on pre-existing conditions are eliminated by the 2010 Affordable Care Act.
Reply With Quote