CLL website

Hi Doug,

Thanks for info; I've actually been spending a fair amount of time looking at the pages, trying to decide among my options.

There seem to be a great deal of things coming up at the same time, and more in development. And, it seems that it makes no real difference in which order you try them.

I think we're going to go the Rituxin/fludarabine/cytoxan route first, as is being done at M. D. Anderson with some apparently great results.The side effects seem to be minimal for most folks. Then, if need be, there are several (actually 40-50) new monoclonal antibodies being developed. Some folks are suggesting the protocol above, with a second round of a different monoclonal antibody to "clean things up." The antisense sounds extremely promising as well. I just read about it last night for the first time. I'm going to look into it a bit more before my next appointment to see what Brian makes of it.

I'm really doing quite well now. If they didn't tell me I was sick I wouldn't know I was. I'm continuing to work a four day week and no nights. I'm actually volunteering for a few weekend days on L&D since I now haven't delivered a baby in a few months. You can't call yourself an obstetrician if you don't "get wet" occasionally, as we say in the business.

Was I correct? Did Jen win the pool? She'll be thrilled! Actually, Dan won the pool...now he knows he has a matching kidney out there!

Later,

Dave

Message to Bob

Hi Bob,

Thanks for your note. I appreciate your thoughts, and I also appreciate the fact that it's hard to figure out what to say about my condition. Get well soon??

I'm actually doing pretty well right now. After the initial illness finally cleared, I began feeling normal again. I've been significantly depressed at times (probably a normal reaction) which makes it hard for me to sleep very well, but otherwise Kathy and I are both doing okay.

I'll be seeing my doc again in a couple of weeks. We're going to discuss the next step in my therapy; to treat or not to treat! He's recommended a combination of chemo and monoclonal antibodies, the newest kid on the block. They're getting about 60% complete remission rates with this new combination. We'll see if I can successfully get into the remission group with these kinds of odds, after missing out on the should-have-been sure odds of getting a donor match with a sibling! If I can't get better with that treatment, there are any number of new possibilities on the horizon, currently in clinical trials.

I guess the good news for Deb is that she's off the hook for a kidney for Dan, and Doug's on the hook!

That's all for now. Hope to see you guys in August, but I really don't know if we'll be travelling at that time; I may be undergoing my therapy during that time.

Oh, yeah. Before we start any therapy, we're going on our long-planned trip to Germany later this month--business/first class, all the way, thanks to coupons we got after last year's fiasco. We're leaving on the 16th and will be travelling to several places in northern and old east Germany where we've never been before: Quedlinburg, Goslar, Fritzlar and Hamlin. I'm really looking forward to the trip.

Dave

"Schnack, Bob" wrote:

Dave (and Kathy) -- I know I (and Kelsey) been "silent" by email about your leukemia. I just haven't known what to say, and I don't want you to think that we don't care or don't have concern. We think of you often and hope for the best results from whatever therapies you decide to go with. And as I'm sure you know, Deb, Kelsey and I would do ANYTHING we can to assist or help out. Bob

The antigen match pool results.

And the answer is......

six!

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.
Dave

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 JNorman@aol.com 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.

Later,

Dave

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 http://www.healthtalk.com/oncology/horiz/khouri/index.html?mid=02040912f )
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).

Dave

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.

Later,

Dave

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?

Later,

Dave