Originally Posted by Lisa V
Susan, it's kind of a Catch-22 situation for doctors. On the one hand, they know that acting as early as possible may increase your odds for a successful transplant. On the other hand, waiting may save you from having to go through it at all. It's a gamble, though, so they just have to evaluate your numbers and try to guess where they'll go from here. What you have to keep reminding yourself, though, is that medical professionals are looking at odds and comparative "success rates", and usually not on the effect the course of treatment is going to have on your life. In their minds, a chance at full recovery may seem preferable to a life with lower than normal counts. Whether that is true for you on a personal, emotional or financial level is something only you can answer, but it is a question that must be addressed. Don't just assume they know what's best for you-- they don't know your life.
In order to even begin to make such a decision, however, you'll need to know if you have a suitable donor. Do you have a sibling match? If so, that may help weigh the argument in favor of BMT, but if not, I'd explore other options. Successes in MUD BMTs have increased in recent years, and they are being done on older patients now than would have been considered a few years ago, but it's still a rough road to travel. If you do decide to go that route, I'd look for a transplant center with plenty of experience and a good track record for AA patients. There are usually many snap decisions that must be made during the process, and a transplant team's expertise can make a huge difference in the outcome.
When you say "transfusion-free for 12 weeks", do you mean you still are? You don't give your Hgb, but with Plts in the 30s you should be okay there. If you're not showing any signs of relapse, I'd be inclined to wait a while longer. Counts can sometimes plateau and then start to creep up again, particularly if you don't attempt to taper off the cyclosporine too soon. If they're really "stuck", a second round of ATG may help to unstick them. Even if it doesn't, there are numerous people here who have simply learned to live with lower counts. It's not ideal, but as long as you're not needing transfusions and you are exercising some basic common sense you can have a decent life.
My husband's doctor started talking BMT at some point after his second ATG, but we wanted to wait. I'm glad we did, because his counts have continued to rise, albeit slowly. His Hgb reached normal range after a couple of years, and his Plts have been in hovering in the 100k range for the last couple of years. He feels fine and has a normal life, whereas if he had a BMT, even under the best of circumstances he would most likely be unable to work on our farm for a few years, which for him would be intolerable (not to mention bankrupting). It's an individual choice, I only bring this up as an example of the types of things you need to consider.
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