Over the last couple of days, I’ve been going in to work from 5:00 am till 9:00 am, to get in four hours, before leaving to take Beth to her Vidaza treatments and doctor’s appointments. Wednesday and Thursday she will only have Vidaza treatments, so I’m going to continue go in and work very early in the morning, then leave to take her to her treatments, and then drop her off at home and go back to work for the afternoon, to get full days in. We’ve had to do it this way because all of the older guys started school this week, and I’m trying to take off as little time as possible.
One of my greatest fears is the prospect of taking unpaid time off of work, and thus not having an income during the critical time when Beth is most heavily involved in her transplant process. We learned quite a bit about the transplant procedure and schedule yesterday.
First, there are at least five potential donors who matched on 10 of 10 HLA (DNA) categories. Not all of these are ideal simply because of their age (in their 50’s), but they are continuing to search and there may be more of these folks, as well as some 9 of 10 matches that may be more well suited physically. And again, there needs to be some further testing for all of them. (Apparently in one of the more important categories, Beth has a somewhat rare combination of markers).
Beth’s oncologist, <a href=”http://www.wpaci.org/specialists/index.cfm?sh=s&d=348&p=1253″>Dr. James Rossetti</a>, told us that, because of Beth’s <a href=”https://johnbugay.wordpress.com/2011/08/24/an-important-update-to-the-blood-charts/”>recent progress</a>, we have every reason to expect that she can “move to transplant” as soon as we find a suitable donor.
Here’s the rough transplant schedule when that occurs:
- Daily Outpatient treatment (3 days, -9 to -6, treatment with Kepivance)
- Inpatient chemo and radiation, (6 days, -6 to -1, Fludarabine, Busulfan and Thymoglobulin, and two days of total body irradiation).
- TRANSPLANT (Day zero)
- Daily Outpatient – from approximately days +1 to +30. Daily monitoring (five- to 10-hour stays) at <a href=”http://www.wpaci.org/index.cfm”>West Penn Hospital’s</a>Medical Short Stay (MSS) unit. There is also a 75% chance of an infection that will require a readmission.
- Days +31 to +100 – twice-weekly office monitoring.
If there is going to be a relapse, it will most likely occur during the first year after transplant. Two years out from the procedure, the chance of a relapse is minimal (just 1% To 2%). And five years out, that risk is almost nonexistent.
Beth has a roughly 15-20% chance of mortality during this process. In the <a href=”https://johnbugay.wordpress.com/2011/08/23/back-home-from-the-intake-meeting/”> mortality chart provided below</a>, the “immediate complications” include all kinds of infections, as well as acute Graft vs Host (GvH) complications, some of which can be fatal. Some chronic GvH complications can also be fatal, but most are treatable with medications.
The ideal outcome will of course be that Beth can live out a long and healthy life span, with minimal requirements for medications to control GvH symptoms (which can also fade over time).
Early on I told Beth that this was not a disease that she’s temperamentally suited to have. She’s always been more of a person of action: “tell me what to do, and I’ll go and do it.” But there are many uncertainties with this process. Those uncertainties are hard to deal with, but the meetings we had yesterday helped to clear up many questions we’d been having.
Interestingly, Dr. Rossetti is a former Roman Catholic and a convert to Eastern Orthodoxy. We had a bit of a conversation yesterday about church fathers and ancient Rome and T.F. Torrance. Pretty cool.