A tentative transplant schedule

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=”http://johnbugay.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=”http://johnbugay.com/2011/08/23/back-home-from-the-intake-meeting/”&gt; 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.

An important update to the blood charts

One of the more vexing issues for us has been the notion (a) that Beth’s levels needed to be under control before the transplant to maximize her chances for success, and (b) the key number that we were watching, the hemoglobin level, was continuing to go down through these treatments.

Yesterday’s intake meeting was an important milestone for us, not least because I accidentally stumbled upon a chart that contained all of Beth’s blood numbers, not just one day at a time, but in chart form. Dr. Jalil had one of these charts for roughly the period in July and early August, and Dr. Rossetti graciously had one printed for me with the most current numbers.

A more complete blood chart, as of 8/23/2011

These charts had some numbers that I had simply not seen before, because I was asking the various office staffs to send the individual blood numbers, and I wasn’t always receiving them.

I’ve updated and reproduced the chart here, using some of the missing numbers and there are some really important things to note. First, look at the Blasts level. In July, they went way up, after the first cycle of Vidaza. We hadn’t seen this. And after the second cycle of Vidaza they went down to zero. That’s a critical level, because these are the cancer cells. Note also, the Blasts level went up a bit later in August as well. But after this cycle of Vidaza, I think we can expect to see some more zeroes.

Note too, the Hemoglobin levels went up just a bit between August 11 and August 15. That small rise was attributable not to a transfusion, but just to her own system raising her hemoglobin level. In fact, she may not have required a transfusion after August 11 (on August 18), given that level of 8.7 on August 15, but she got one anyway.

Her White Blood Cells, Platelets, and Neutrophils (especially these) are seeming to moderate, closer to the normal range over time. This is exclusively a function of the Vidaza.

So while we had been looking at just one number, Hemoglobin, and not seeing much progress there, the doctors had been looking at some of the other numbers, and that whole picture was a much more hopeful one.

Back home from the intake meeting

On balance, it was a positive meeting. Dr. Rossetti went through some of the odds, and it came out like this:

  • 30% cure;
  • 20% immediate complications;
  • 15% major longer-term complications;
  • 35% chance of relapse.

The odds are not strictly wonderful, but he felt comfortable nudging Beth into the better categories because of the good way she is responding to the treatment (I hope to show some good numbers/trends in the near future).

We’ve gotten five potential donors who match on all 10 of 10 HLA categories. Some of them are not ideal, because of things like their age, and they all need to undergo some additional testing, but they’re out there, and there are still more potential matches that can be made.

I’ve got some really good blood charts, showing some really good trends, and a quasi-schedule of the transplant, once a donor is found. I’ll try to post more of that over the next several days.