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.

It’s going to be a busy week

It’s going to be a busy week for us. Beth has a doctor’s appointment today and our big “intake meeting” with the transplant folks tomorrow. I expect that we’ll learn what treatment is going to be like for the coming months, the status or our donor search, maybe get some clarifications on the diagnosis and prognosis, and a lot more. Meanwhile, Beth begins Vidaza, Cycle 3 this week as well.

Beth had a pretty good weekend; we visited my cousin Walt, who is also a veteran; he recently had heart bypass surgery, and he gave us a pretty good report about how to navigate the VA system. There’s one difference: he’s a Vietnam veteran, and much of what the VA will cover from that conflict is settled; we are still waiting on a study by the VA on the topic of the “Long-term Health Consequences of Exposure to Burn Pits in Iraq and Afghanistan”. Stay tuned.

The car situation is going to be much complicated from here out, as the older guys start school today; two of them will begin the CCAC Nursing School program, and a third is starting general studies there as well. There are five of us going different places, and three cars. The younger kids start school next week. Fortunately, recent changes in the school bus schedules don’t seem to have affected us.

What’s coming up

We’ve traveled through a relatively uneventful time in this illness. Beth mostly sleeps a lot, and takes in some blood every once in a while. Now we’ve got a little flurry of activity coming up, and we should learn some important things.

Beth’s hemoglobin level fell below the magical 8.5 level, to 8.4, and so she’ll be going in for another transfusion: type-and-cross-match today, and two units on Wednesday. One of the things that I’ve read on the CMML discussion boards is that there is a kind of deep-down body pain that you get – it’s the pain that prevented her from working back in June – and my thought is that 8.5 + two units will take her to a point at which she won’t have to deal with that for a while.

Then next Monday, August 22, she’ll begin Vidaza Cycle 3, and on the 23rd we’ll have our big Intake Meeting with Dr. James Rossetti from West Penn Hospital. (West Penn is an MDS Center of Excellence ).

We should find out a number of things that day, not least of which will be the status of the donor search, the course of treatment, schedules, and various other odds and ends, I’m sure.

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