Tuesday, March 13, 2007

catching up with dr. schuster

Su and I flew back to NYC on Saturday, 3/3 for my appointment with Dr. Castro-Malaspina on Monday morning. I also managed to get an appointment with Dr. Schuster that afternoon, who has been very frustratingly difficult to reach. I was eager to find out if he had spoken to Dr. van Besien about my diagnosis. Wanting to talk to him about my consultation with Dr. van Besien and his suggestion of the SGN-30 antibody study, I did not want to do anything before discussing these matters with him. This was imperative so that I could begin treatment in Chicago soon.

Su and Clare went with me to see Dr. Schuster at Weill Cornell.

Dr. Schuster told us that he had been playing phone tag with Dr. van Besien. Hopefully, they'd connect very soon. He was, nevertheless, in favor of my participation in the SGN-30 antibody study. Like Drs. Stiff and Castro-Malaspina, he told us that at best it would give me an extra boost if given with GND and at worst, it will not have no effect. He told me to go forward, start the GND treatment and if interested also the antibody trial. I should just make sure to have Dr. van Besien cc: him on all reports and scans.

As of now, I'm on line for a mini-transplant in late May or early June, he told us. He wasn't able to tell us what specific salvage regimen I'd receive. The kind of conditioning chemotherapy was dependent, he explained, on if I'm in remission or not. A typical regimen for those in remission or with very little disease is Busulphan and Fludarabine and perhaps some radiation. If I'm not in remission, the conditioning chemo is more aggressive, but Dr. Schuster was not more specific.

A good match for an adult unrelated donor is 9/10 but preferably 10/10 on the allele level. A good match for cord blood is at least 4/6 match, but 6/6 is ideal of course. If a suitable adult unrelated donor match is not found, then cord blood is the next option. If the search for a good cord blood match proves empty, then a donor drive will be initiated.

New York Presbyterian Hospital has done over 60 cord blood transplants, he said, and "a lot" of unrelated donor transplants. Approximately 25 allogeneic transplants a year are performed at NYPH and about 6-10 of them are from cord blood.

The three major risks are GVHD (even with a perfect 10/10 match), infections (mostly viral), and relapse. There's a 28% chance of GVHD post-transplant, which doesn't means resulting in fatality. As the other specialists have told us, the side-effects can range from minor to severe. In its mildest form, it can be a skin rash and in its severest form, it can be life threatening. Dr. Schuster estimated that there's a 40% chance of cure with the remaining 60% split almost evenly between severe GVHD and relapse.

An allogeneic transplant is my best bet, he said to us. He wishes the news was better, but the alternative to no transplant is surely worse he stated.

At the conclusion of the appointment, I took a cab to the airport, where I waited for my 6:30 flight back to Chicago.


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