Monday, April 29, 2002

The antigen match pool results.

And the answer is......


I matched just three antigens each with my brothers and none with my sisters, so the total match was just six.

We talked to Jen today and told her that we thought she had won the pool. She wasn't thrilled; "I don't want the money," she said. I told her I'd send her the address for the Leukemia/Lymphoma Society and that they'd be happy to take her winnings.

I'll make a copy of the final report and send each of you guys a copy for future use, if needed.

That's all for now...this pool certainly ended rather anti-climactically.

Sunday, April 28, 2002

No marrow match for me.

Hi Guys,

We're back in Colorado after spending about 9 days in the Dallas area with Jen and Dan and the new kiddo; a cute one she is. Jen was able to get out of the hospital in about 36 hours after her surgery with Dan pushing for an early discharge. She's doing great.

While I was gone, did any of you get any weird messages, allegedly from us? Last Friday we got a strange message from a stating simply:

This is a new game it is my first effort you are the first I trust you would approve.

Within minutes of the time that message was sent out we received messages from a bunch of servers handling e-mails saying our message had a virus and was being quarantined, or that they could not find the address of the recipient.

We, of course, were not here and our computer was not on. We sent out nothing. Did someone steal our e-mail address somehow and send out a virus in our name?

I downloaded all the new updates from Norton and scanned the entire C drive but nothing showed up as a virus. Did any of you get anything strange from our address?

Well, the marrow match failed me! Each of my siblings has a match, but not poor old me. Well, at least now I don't have to make that horrible decision about trying the transplant with a 25% mortality!

The antigen numbers: I'll likely get the count in the next few days after I go back to work, but they have to be 0, 6 or 12. Can't be any more than 12, since no one matched me, and it has to be an even number since there were two sets of matches. What were the numbers Diane and Jen picked? Uh, everybody paid up?

Before the failed match, my options were the transplant, watchful waiting for now, or chemotherapy. Brian, in a voice mail telling me about the non-match, mentioned combination chemo with the new monoclonal antibody drug, Rituxan. I need to look up the morbidity/mortality numbers on this, as it's pretty much cutting edge stuff, but the early numbers look great. I just want to try to make sure that the "cure"won't hasten my demise! They've been studying the stuff in combination with some newer chemotherapeutic drugs at M. D. Anderson and Walter Reed. Only eight people world-wide have died of Rituxan therapy alone,out of 100,000 folks. Those numbers don't look too bad. My next meeting with Brian will be on the 16th. I'll keep you updated.I think that's all for now.



Friday, April 19, 2002

We're outta here!

Hi Guys,

Kathy and I are leaving town tonight to go to Dallas to be around for the appearance of Massaviol child #2, or "Deuce", as she's called for now. I think we may find that nickname sticking for a while even after she has a real name. Anyway, we'll be incommunicado, as least e-mail-wise, until the 28th. So I won't be able to update you guys on antigens and matches until after that date.

I'm considering my options and my enthusiam for the marrow transplant waned considerably after Brian quoted a 20-25% mortality! I was surprized (no, make that shocked!) to hear that the procedure was so dangerous. I was of the impression that not only was it a less morbid procedure than that, but that it could effect a"cure." Turns out I was mistaken on both counts. Brian mentioned that he'd just lost a patient to a marrow transplant procedure and that of the two others he'd been telling me about who were apparently doing well, one is now showing signs of recurrance of the disease.

Well, hell!

The folks at M. D. Anderson make it sound like the mini-transplant procedure is not all that bad, and in fact are doing it even in their elderly patients. (See )
Amazingly, Dr. Khouri's phone number is available on the MDA web page, which is linked to this site. I think that if we're talking about transplants I may need to call him. They do 600 transplants a year, probably more than anyone else in the nation except maybe Sloan-Kettering.
But there are other options as well. As Doug said months ago, in somefolks the leukemia does not progress. Therefore one option is to do nothing. At least for now. I can always opt for therapy later if needed, but will, of course, be older and potentially more debilitated at that point.

Or I can opt for other therapy now. If I get some chemo of some sort now, it doesn't exclude the possibility of a BMT later (presuming I'm still healthy and my donor hasn't killed himself in a car wreck or something). The monoclonal antibody therapy (Rituxin), which selectively attacks and destroys leukemic cells sounds very interesting, but I haven't got much data on the morbidity/mortality of that option.

Anyway, I'll be considering these options and am scheduled to see Brian in about a month. As soon as I know results of the HLA types I'll get the data out to you guys. That's about all for now (unless I get to the computer with something else over lunch time).


Tuesday, April 16, 2002

Transplant update

Well, this is getting to be some serious s**t!

First, what everyone is waiting to hear. There are two HLA types back and they match...each other. But not me. He didn't have the papers (they'd been sent out to be scanned into the computer system) but I have to assume they were Deb and Diane, who are perfect matches for each other. Doug's will presumably be available by the end of the week or by next week at the latest. Dan's should have gotten there by today and be done by about ten days to two weeks from now.

Come on guys, it's up to you!

Now, if one of you guys match, the transplant will be done, not in Denver, but likely in Seattle, but not before the fall, at the earliest. It will take time to thoroughly test me to see if I'm healthy enough to try to withstand the transplant procedure before we set it up. If we end up doing a transplant, the stem cells from the donor will be collected from the circulation, not from digging the cells out of your bones; a much more palatable option.

Now, this is also what I learned today. If we do a transplant, there is about one chance in four that it will kill me! But if it doesn't kill me, I can live to die of some other disease process (the stroke I've always worried about?) some years later. But I'll be on immunosuppressive drugs, like any other transplant patient, the rest of my life. Which, of course, will make me more susceptible to multiple other diseases.

Geez, I thought it might be simpler than that. Of course, if I don't do anything, the CLL has a 100% mortality rate. We just don't know when it will take me; six years, maybe ten years, maybe a couple of decades.

I've got to decide after the other two HLA typings are completed!

Man, and I thought I might be able to retire some day. I may not live long enough to do that.
If there is no match, chemo is the next option. I may end up at M.D.Anderson in Houston for some new stuff they're trying. There are some short term ( one to two years) studies which show great promise.

In any case, with whatever therapy, I'll probably be in the hospital a month, then have to stay in the area (Seattle or whatever) for a couple of more months. Then, they don't let me go back to work for a year!

I wonder if I'd remember how to deliver babies after an absence of that duration. Or do surgery. Or even pap smears.

To answer a couple of other questions folks had:
1) If, after being HLA typed, you want to be put in the marrow bank, the folks here that are doing the typing (Bonfils Blood Bank) can enter your data into the national registry. 2) There are, to Brian's knowledge, no restrictions on folks who have lived outside the US in terms of marrow donation, but it may vary from bank to bank. 3) If there is no sibling match, they will not look at unrelated donors as the chance of a match is too unlikely.

So, I have to decide if I want to partake of some potentially lethal therapy for a disease that is not even making me feel ill, for the moment, and may not kill me for a decade or more, in the hopes that I may be cured, but disabled (in terms of being immunocompromised for the rest of my life), or whether I want to wait around to see how long it takes to get sick, hoping some new therapy comes around, knowing that I'll likely be weaker if/when that happens and therefore be a poorer candidate for the therapy! Whew!

If I think of any other stuff from today's discussion, I'll add it in a subsequent note tonight or tomorrow.

So, looking at the worst case scenario, who in the family would like to be the caretaker of all the family pictures? The genealogy files? The Valiant? I'd like to find good homes for the stuff in case I don't make it out of the hospital, and, as you guys all know, I've got a lot of stuff. Seriously, let me know who might be interested in what (no, Kathy will get the 401-K, you guys can't have that!).

That's all the cheery news for now.



Saturday, April 13, 2002

The Match Pool

So, is everybody that wants to be in the pool already in? And is everybody paid up?

I'll be seeing my doc on Tuesday afternoon. There may, or may not, be some information provided. I know my HLA type is back, but I don't know if the sib's matches will be back or not yet. Certainly not all will be back yet; I don't think Dan's has been sent in yet and Doug's got there last week. But they may have information about Deb and/or Diane.

Thus the question: if partial information is available, do you guys want to get it as it comes out or have a grand finale announcement when it's all done, with all the data at one time?

We're still doing okay; I'm working 4 days a week now, and getting hammered on the days I'm there. My patients were waiting (patiently?) for me to come back. We're going to Dallas next Friday night and will be there for about 10 days while Deuce gets delivered and Jen recovers somewhat. More HLA information will likely come in while we're gone and so won't be able to be disseminated until we get back, on April 28th.

Kathy had her post-op check yesterday and is doing well. Everything had healed normally. She's pretty much back to full activity now.

I'll be in touch again probably on Tuesday PM. What will you guys want me to report on at that time, in terms of HLA info?