A few more things we learned yesterday

Now that a donor has been recruited, Dr. Rossetti thinks that we will be able to “have stem cells by mid December”. No dates are firm yet, but we should be able to have a firm schedule in place by the end of next week.

Beth’s blood counts continue to be critically low – her white blood cells yesterday fell below 1.0 (“.94”) for the first time since I’ve been watching the numbers. And as I noted, her hemoglobin was 7.2, and her platelets were only 18 (again, lowest I’ve seen them). So today, Tuesday, she’ll go to Jefferson Hospital for her (7th of 7) injections of Vidaza, for two or more units of blood, and also, for platelets.

Beth’s bone marrow is defective, and every stem cell she produces is defective, and so the goal over the next few weeks (including the “intensive chemotherapy” and radiation) will be to bring her “as close to zero bone marrow” as she can get. The Vidaza, while not enabling her to produce good blood cells as promised, has at least gotten her most of the way there already. And that’s a good thing. [Also a “God” thing, as I had written at first.] The reason you want all of it gone is to reduce the chances of relapse down the road. And in addition to the “intensive chemotherapy”, the full body irradiation “cuts relapse rates 20%”, according to Dr. Rossetti. Every little bit helps.

Once the new stem cells are transplanted, then Beth’s numbers should begin to go in the right direction. Her white cells should begin to recover within 2-3 weeks. Engraftment should occur on or before day 30. Hemoglobin production should start in about three months. Anti-rejection drugs will be administered between days 35 and 90 – more or less to either to control or enable some “graft-vs-host” (GVH) effect. To some degree, the GVH has a “mopping up” effect – the immunity of the new stem cells will target and destroy any remaining defective bone marrow, or any remaining defective stem cells.

Too much, to be sure, can cause problems. But this is what the donor search has been all about: matching on precisely the right DNA characteristics, to give just enough, but not too much, GVH.

A donor has been selected

We got a call today from the Transplant Coordinator, telling us that the donor has been selected. They actually select the third of the three donors we had been undergoing testing — the last one to come in. This is good news — when we saw Dr. Rossetti, he had liked that second one a lot. And he likes this one better. This first choice is a young female, not from the U.S., same blood type as Bethany. She will be contacted with the news, and if she agrees to do it, she will be scheduled for a complete physical exam. She will also be given a list of tentative dates for the procedure; the earliest of these will be about three weeks after the physical exam.

The donor goes through a five-day regimen of injections to (a) increase her production of stem cells and (b) force the stem cells out of the marrow and into the bloodstream. On the day of the transplant, the donor will be hooked up to a machine like a dialysis machine: blood will flow out of one arm, through the machine, which will “harvest” the stem cells, and the remaining blood will be put back into the other arm. This is about a 6-8 hour process for the donor. The stem cells will be stored in a bag very much like a regular unit of blood. Since the donor is outside of the US, they will be put on an international flight to Pittsburgh, and transported to the hospital.

By that time, Beth, also, will have undergone an 8-day regimen of intensive chemotherapy and full body radiation. The intention, again, is to destroy all of her damaged bone marrow. The hope is that the new stem cells will “engraft”, or set up shop, within 30 days, and begin to form new bone marrow within Beth’s bones. About that point, Beth will begin to face “rejection” issues — “graft vs host”. Some of this effect is good — the immunity effect of the new “graft” will, it is hoped, destroy any remaining damaged bone marrow and leukemia cells. This is vital, in fact, in preventing relapse. The unfortunate side is that the “graft vs host” also can have side effects that can be very serious, and can even lead to death (i.e., pneumonia and other infections become a very real danger.). And this danger lasts about a year.

Needless to say, Beth is very apprehensive about this. But at least we are moving forward now.

We should be close now

I spoke with the Transplant Coordinator at West Penn yesterday, and the testing from all three donors is in now. All three of these match on 10 of 10 HLA (DNA) categories. All are three are female; two are younger, one is older (described as “under 50” still); two are international, one is domestic. Their blood type and age will be considered in the decision. Doctors should decide soon now. And it could be 3-6 weeks till Beth starts her conditioning regimen.

Our second potential donor is approved

Yesterday I learned that we have confirmed a second 10/10 donor, and we may learn of testing results from a third. That would mean we will be able to select from among three potential qualified donors. Given that there are 10 million people in the US database, and seven million people in the international database, to come down to only three potential matches … that’s just an amazing number to me.

One of these individuals is from the United States, by the way; the other two are from the International list. So in that case, we may have to wait for an international flight to bring in the stem cells on “transplant” day.

In agreeing to submit to all of the additional testing we’re asking them to do, all three of these folks are tacitly consenting to be donors, but once the doctors select the best donor, then that person will need to be recruited — that is, I guess there is all kinds of paperwork and legal stuff to be filled out. I don’t know much at all about that process, but there is some further work to be done.

We’ve been under the impression that it will take about six weeks from the time a donor is selected until “transplant”. So if the donor is selected next week, that would put “transplant” for us right in the middle of December. And that, in turn, would mean a week or more in the hospital, followed by 30 solid days’ worth of running to the “medical short stay unit” at West Penn, where Beth would have daily blood tests and would then receive transfusions of whatever might be needed on that particular day, whether that be additional hemoglobin, or platelets, or intravenous antibiotics, or whatever.

I say “30 solid days’ worth of running”, but that’s only if she’s healthy. There is a 75% chance during this time that she will need to be admitted because of some kind of infection. In fact, the whole first 100 days, Beth will be in an extremely vulnerable condition – not having an immune system of her own, but dependent upon the immunities of the new stem cells that are implanted into her.

It’s a long and convoluted process, and given that this is the only cure for the leukemia that Beth has, as bad as it gets, the cure is not worse than the disease. Although, we are told, it may seem that way at times.

The good news is that God Rules. That is the one constant in the world that we can truly count on.

A clarification

In light of the relatively good news we had yesterday, which I’ve summarized here, there is a bit of clarification as well.

The real danger, early on, had been that Beth’s leukemia would progress into something more aggressive. But the bone marrow biopsy last week has basically shown that the disease has been controlled and beaten back to some degree.

That’s the good news. The caveat is that all of this is just temporary. We are in a kind of holding pattern. The disease is controlled, it’s not progressing, and Beth’s health is improving, but it is only doing so pending the arrival of a huge milestone, called “the transplant”.

Her bone marrow is still diseased on a genetic level. The Vidaza can’t (doesn’t) work forever; either the body adapts to it, or it stops working at a point. So at some point, her genetically-damaged marrow will continue to put out genetically damaged “blasts”, and in very short order these would again begin to overwhelm her system and possibly put her into aggressive leukemia. That’s just the way this one works.

So we’re waiting to hear from the transplant folks on the status of an acceptable donor, so we can move into the next (“curative”) phase of this. Only the transplant can get rid of her diseased marrow and put her on a path for a normal life.

Our doctor says that we will move ahead with the transplant just as soon as an acceptable donors is selected. I called the transplant coordinator at the hospital yesterday, and of the initial group of “10/10” matches, they are following up with four of them (one international!) to have more testing done. We should know something in a couple of weeks.

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/”> 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.

Earthquake!

There was a small earthquake in Pittsburgh around 1:52 pm. Right in the middle of our discussion with the donor coordinator. We felt the building shake.

There are at least 5 potential 10/10 matches. Some may not be ideal because of age, but they are there.

This gets bigger the further we get into it

At first it was a struggle just to learn what was wrong. Last Monday, after about three weeks and two hospital stays, we finally learned what the diagnosis was going to be. (And two separate biopsies have confirmed this).

The other night, Beth got a call from someone in a support group sponsored by the Leukemia society, from a woman who had undergone this procedure probably about eight years ago. She is experiencing some ongoing “graft-vs-host” symptoms, and so Beth asked me to look them up.

In my Googling, the site marrow.org kept coming up: with an excellent overview of the procedure; with an excellent overview of the follow-up treatment; and, in a dimension that I’d thought about but which really only hit me now for the first time: the financial aspects of it.

As it turns out, this Vidaza treatment and even the period of intense chemo and radiation known as “conditioning” are only the tip of the iceberg with respect to this entire process. The real “marrow” of the thing, so to speak, occurs post-transplant.

Up to a point, you don’t even know the right questions to ask. You’re just trying to find out, “what’s the next thing we have to do, we want to get it right.” Yesterday I had my first glimpse of what might be termed “the long view,” and I can see now that it’s just going to take a while to get my head around the process.

Here are just some of the steps:

Some time during days 30-100, you “will probably” get to go home from the hospital, but still there, will likely be almost daily outpatient follow-up. In the “long term survivorship” document, it is said, “by one year after transplant, many transplant survivors are able to take part in their usual activities, such as work or school.”

And none of this is to talk about the financial considerations that go along with this whole process.