Update on how things are going.

Hello everybody,

I just wanted to send a quick update on what's going on with me lately.

First of all, I'm really doing pretty well. I feel, for the most part, normal and am working four days a week in the clinic and am starting to do a little Labor and Delivery work again, for the meanwhile.

Many, but not all of you, know that after testing my siblings we have found that they all match another sibling but nobody matches me, so a bone marrow transplant will not be an option unless we end up looking in a national registry or something.

Plan B is to start some chemotherapy soon. In past years chemotherapy wasn't even considered until one's white count was over about 100,000 (normal being about 10,000). My white count has been steadily climbing since we found I had this disease, but is still "only" 43,000 as of last week.

But there are some new chemotherapies available, the most interesting being the new monoclonal antibodies that selectively attack the abnormal cells, sparing the normal ones. We're going to start therapy on July 22 with a combination of these monoclonal antibodies (called Rituxan) and a new chemotherapeutic drug, fludaribine, and a standard drug, cytoxan. The combination is getting some great reviews from M. D. Anderson and they've found a high percentage of complete remission, at least in relatively short (18 month) follow-up studies. It seems to work best in previously untreated patients with low-grade disease, which definition I fit perfectly.

So I'm actually looking forward to getting started on this regimen. But before we start infusing toxic substances into my bloodstream. Kathy and I are taking a trip to Germany starting next week. We'll be going to a number of places we've never been before. And thanks to upgrade coupons and frequent flier miles, we're going first/business class both ways! We're really looking forward to it.

That's about all for now. We'll keep you updated as things progress.

Later,

Dave

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

The Packs and the Pool

Hi All,

We just got back from a quick trip to Oklahoma to visit with Kathy's folks. On arrival we had a message from SC saying they had finally gotten their pack. It apparently arrived over the weekend. Did anyone else get the pack over the weekend?

Just curious; how were they sent? FedEx, UPS, USPS, etc.?

And, so, anyone interested in setting up a pool about this matching stuff? The Doogmeister used to be the Commish of the local sports pools in SC. Would he be an obvious choice? I think HLA typing involves looking at 6 different antigens on the cells for a match. A person can match none the antigens, all or anything in between. This is ripe for some kind of pool to see who is the closest match. Say $5 to enter, with half going to the winner and half to the sib who matches (as sort of a consolation prize?).

Later,

Dave

Marrow transplant questions

First, I want to thanks all my sibs for so willingly giving up their SSAN for the chance at winning a free trip to Denver and the opportunity to give up some bone marrow! You don't get offers like that very often.

I'll be faxing your information to our lab in downtown Denver tomorrow; the lab will then, in the fairly near future, be sending out the packs of tubes, instructions, etc. You should have the name of the contact person in the pack, but just in case, it's Kathryn Barkley at 303-861-3568.

I really don't know the details of this procedure at all (Deb asked if it was painful). I would presume that the donor would be given an appropriate anesthetic for the extraction, but I have never witnessed or even read about the procedure. Maybe we can find out on-line.
What Brian is proposing is what's called a "mini-marrow transplant"which is a relatively new procedure. Rather than completely destroying my marrow with chemo and radiation, which certainly has it's own risks, and then replacing it in hopes that the donor marrow will "take," what they do with this "mini" procedure is suppress my marrow with chemo and then infuse the donor marrow. With my marrow compromised, and the donor marrow un-compromised (immunologically speaking), the donor marrow would then establish a "graft-vs-host" reaction, attacking and, hopefully, destroying, then replacing, the diseased marrow. Interesting stuff! This is all uncharted territory for me; I have no idea what I'm in for. I just recall that the usual graft-vs-host reactions (which is usually an unwanted problem, wherein an immuno-competent transplanted organ begins rejecting the immuno-compromised body it's transplanted into) is not a pleasant thing for the body that's being rejected. But, hey, what's the alternative? As Mom says, I'd rather be on the right side of the grass so I'll have to put up with whatever comes along.

I've had questions about other folks being donors; I'm told that the best chance for a match is with a sib (with about a 25% chance for a match with any one sibling). Next best would be offspring (but my offspring's DNA has been "contaminated" with that Irish influence from their Ma), and then other more distantly related or unrelated donors. If there is no match with any of my siblings we'll see where we need to look next. I've been wondering about the utility of using cord-blood from my soon-to-be-delivered granddaughter, blood that would otherwise be discarded. I mentioned stem cell collection from unrelated donors, since we collect large amounts of it on L&D for that purpose, but Brian said they didn't use it much in adult patients. I didn't, however, mention the possibility of a grand-daughter's cord blood, but that may not make a difference to him. We'll see.

After my initial illness, during which we found this disease, I slowly recovered my strength and went back to work for almost a couple of weeks. But then, with all that was going on, I began feeling lousy again. I was not sleeping and found it hard to concentrate at work. I lost twelve pounds in two months. I've been off work again for the last week but hope to return again, at least part-time, next week. I hope things go well this time.

Diane joked that if I ended up with some of her marrow, I might suddenly get a craving to start smoking and to study Judaism. I was wondering what I might do if I ended up with some other sib's marrow. I thought if I got Deb's I might start reading a lot of paperback novels and drinking lattes. And with Dan's I'd want to go backpacking and tearing my computer apart. And with Doug's I might unexpectedly join the ACLU!

Oh yeah, and Dan said he'd gladly donate marrow to me now for a kidney at a date to be determined.

That's all for now. I'll keep you updated as things develop. And thanks again for being willing to be a potential donor for me.

Until later,

Dave

RE: Yet another update, with more!!

Hi Doug,

Great to hear from you and get your number. I really didn't have any doubts that I would.

Regarding your other message, I think you're absolutely correct that a lot of my secondary symptoms were a results of all the stress and worry over having a lethal disease and trying to put things right for Kathy before I checked out. It was getting increasingly difficult to concentrate on my patients' seemingly relatively minor problems ("I don't care about your bleeding; you think YOU got problems.") while worrying about where I should be buried, how to divide up my estate, where to buy a house for Kathy as the end neared, etc., etc. I was not sleeping at all and had not for a few weeks, was losing weight rapidly (which further convinced me that I had some rapidly progressing disease) and was just feeling crappy. The mind can be a wonderfully terrible thing to toy with, can't it?

Suddenly it's like I've gotten a call from the governor at the last minute, granting me a stay of execution. Not that anything was going to happen any time soon, but I had to plan for a worst case scenario. We'll see how this plays out over the next few months.

Regarding RE's question, they want to test sibs first as the chance of a match is about 25% with a sib (and since I have 4 sibs, that should mean I have a 100% chance of a match, right?). If that doesn't work, they'll try offspring and then unrelated donors. My staff at the clinic, God bless them, are already volunteering to donate! I'm wondering about stem cells from the cord blood of my soon-to-be-delivered granddaughter. I'll pose that question to Brian next week to see if it would be at all helpful to harvest her cord blood, which will otherwise just be discarded.
I'll be forwarding the information on all you guys to the lab early next week when I finish collecting it (Deb is still on vacation and doesn't yet know that I'm looking for her marrow). I would guess that they would FedEx out the packs soon thereafter. I really don't know of any details after that. I would guess that if there is a match that the transplant procedure would be set up in the coming months at some time convenient to the donor. I also don't what the donor has to endure to donate; I really have never been involved in this, but if it's like a bone marrow biopsy it hopefully wouldn't involve more than some brief "discomfort" as we, in the medical profession, euphemise about pain.

Thanks again or you help.

I'll add Paula to the list so you won't have to keep forwarding things to her. Thanks, Paula, for you concern and interest.

Later,

Dave

I want you! And your marrow!

Well, I saw Heme/Onc today. Kathy and I met with a really nice guy named Brian Koester. He talked about the disease and answered questions for me. So, here's what I learned:

I really have CLL; this is not a leukemoid reaction. My continuing malaise/weakness is probably not from the disease as my white count is"only" 27,000.

This is not generally considered to be inherited despite the fact that dad died of the same disease. You guys (my sibs) do not apparently have an increased risk of getting it too.

I'm young to be getting it; usually folks are in their mid-60's or later.

The usual life expectancy is 6-10 years from diagnosis.

It's okay to drink German beer even if you have CLL!

He went over the usual treatments but said that they don't generally treat at all unless the white counts are over about 100,000 (!!!). So I'm thinking that we'll just follow my counts until I'm really sick and then I'll get some chemo of some sort. Then, while he's saying that, almost in the same breath, he mentioned some very new promising chemotherapeutic agents that hold out a hope for a cure. Then, he continued on to say that they are also doing bone marrow transplants in selected patients with a very high cure (CURE!) rate, though they don't yet have long term follow-up data.

Now, the bad news; they're looking to YOU (my sibs) for bone marrow donors!

He's serious. Since I'm relatively young and healthy, as opposed to the usual CLL patient who gets diagnosed at age 70 in acute distress, he's thinking of doing a bone marrow transplant to cure the disease, rather than just doing chemo to control it! I'm just blown away at the thought of a cure for this generally long term but uniformly fatal disease. That is not at all what I expected to be told when I went in today.

They have already drawn my blood for what's called HLA tissue typing.They're interested in contacting any of my sibs who would be interested in possibly being marrow donors. I have all the information they need except Social Security numbers on all you guys.

If I could convince any of you guys to be tested for compatibility, would you send me your SSAN and they will then FedEx you a pack of tubes and instructions to get some blood collected. If there is a collection (or "draw" fee) at your local clinic I would be more than happy to pay you back. Please don't feel forced into this; this isn't like giving up a lung, but it has to be voluntary. Kaiser will pay all costs involved in the shipping and testing of your blood specimens.

I'm just ecstatic over this news. It's so much better than I had expected. Let me know if we can test you for compatibility. If any of you are compatible, we'll eventually (over the next few week [or likely months]) get back with you on the details of the procedure. At this point I really don't know what those details would be. But I'll keep you all updated as things develop.

Thanks for your thoughts and prayers; and bye for now.

Dave

MRI

Hi Jen,

Just a quick note about my MRI; I'm not sure who all knows about my episode of being disoriented while on L&D last weekend, but because of that, I was scheduled for an MRI last night. It went well (very noisy,but otherwise no real problem) and after it was over I told the tech that I was a Kaiser doc and asked if I could glance at the films. They said, "yeah, sure" so I walked over to look at them...and had, of course, no idea what I was seeing! Another tech said the radiologist was through a door behind us, so I went in and asked her if she could take just a minute to look at my films with me. Turns out she's a"neuro-radiologist." I didn't even know we had that variety.

Anyway, she looked them over and said that other than a sinus infection(which I've been battling for a decade or more) there really wasn't much else, at a quick look. Certainly no large masses, tumors, etc.

I had my abdominal CT scan today but it wasn't at Kaiser so I couldn't get to the films. I guess I'll find out something about that in a few days or so. I'll let you know when some results are in.

After feeling just about back to normal a week or so ago, I'm kinda feeling puny again. I'm tired and not much appetite. I've lost about 12 pounds in a couple of months; I don't like that much at all.

I'm seeing the hematologist tomorrow; I hope I get all my questions answered them. Ma's going along, too.

I'll let you know what we find out as we go along in this process. Until later...

Pops

More tests, feeling bad again.

Well, another series of tests, mixed information.

First of all, I was feeling quite well about 10 days ago, went back to work, but then started feeling very weak again. In fact, while on Labor and Delivery last weekend, I got a bit disoriented, not a good thing when I am on call for deliveries, C-sections, etc.

When this happened I told my doc, he ordered an MRI of my head which didn't show much to be concerned about (ie, no lymphomas in my brain). I'm still somewhat weak, so am on a leave of absence for a couple of weeks until we get this stuff sorted out. I'm going to see the Heme/Onc doc tomorrow which should answer, hopefully, a lot of questions.

I had my CT scan today and the results are back already; nothing very specific. Certainly no large lymphomas, though there are several non-specific findings of small but slightly enlarged lymph nodes along the aorta and one in the liver. We'll see what my Heme/Onc doc, Dr. Koester, says about that tomorrow.

My white count went up again; as of Monday it was 27,000! I kinda wish it would trend down for a change. My liver functions and other tests are completely normal now.

Kathy is still doing pretty well for having had major surgery 1 week ago.

That's all for now. We'll be in touch.

Dave

Kathy's doing great!

Hi again,

I visited with Kathy again this morning, before I go to work this afternoon, and she is still doing absolutely great. She is still stable, lucid, hardly using any pain meds and tolerated another liquid diet this AM. When she was about 20 hours post-op she asked if she could go home (maybe she isn't as lucid as I thought!). Anyway, she was to have a regular diet for lunch, her IV, nasal oxygen prongs and catheter have been removed and we walked down the halls twice before I had to leave at about 11:30.

I'll be seeing her again after work tonight and if there is any change I'll send you another update late tonight. Otherwise, I plan to work tomorrow morning and then go to the hospital at noon to bring her home.

Until later,

Dave

Kathy's surgery

Just a quick note about Kathy's surgery. It went quite well, despite some unexpected findings. She had endometriosis in addition to her (benign) fibroid tumor of the uterus. It took about 2 hours, but there were no complications.

So far her recovery has been astounding! She came to the ward in almost no pain. On arrival, the nurse asked her about her pain, on a scale of one to ten; she looked puzzled and said, "Maybe a one?"

I left the hospital at about 7:30. By then she had already downed three glasses of ice chips and had moved on to a clear liquid tray (yum!). She sipped the broth and said "This is really good." (!?)

No nausea, no usual post-op pain, alert and coherent. She is just doing superbly. I'm so glad to have at least that matter off my mind.

I'm still feeling pretty well. My liver seems to have healed; the tests yesterday were almost completely normal on the liver functions; my white count went up a bit, however, to 23,000. I suspect it will wax and wane, or perhaps it is returning to "normal" after having been suppressed by the (apparent) superimposed viral infection. Next week I get my abdomen CT'ed, to rule out any evidence of lymphoma. I'll see heme/onc Thursday, as I think I already mentioned.

I'll try to send out another message tomorrow night when I get home to let you know how Kathy's doing.

Bye for now,

Dave

Quick update

Just a very quick update; my appointment with Heme/Onc is going to be on the 14th; that will give us time to get past Kat's surgery.

I'll let you know next Wednesday how the surgery went, and I'll let you know the following week how my appointment goes and what the specialist says about my prognosis, management and possible treatments. One of my first questions will be about the outside chance of this possibly being a leukemoid reaction.

I looked up the results of the flow cytometry (interestingly, the company says it's against company policy for an employee to look up his/her own labs, for some reason, but that hasn't stopped me yet) and the full report says there are "monoclonal lymphocytes consistent with (not "suggestive of," as I thought I heard) a low grade lymphoproliferative disorder like CLL." That sounds a bit more definite, unfortunately. But, we'll see what the oncologist says and go from there.

Please be thinking of Kathy next week. Again, we both appreciate all your messages and concern.

Later,

Dave

RE: Doug's message.

Hi Doug,

Thanks for the message. Yeah, having Kathy's surgery during this time isn't the best timing, but it was planned long ago. Kathy has mentioned cancelling/postponing it, but I don't see why we need to do that. Nothing's going to change with me in the next couple of weeks. So we're going to go through with it next Wednesday. It'll keep my mind off other things.

I'm to see the Heme/Onc doc on the 14th. We'll see what he thinks we ought to do. Though a bone marrow biopsy would be, I think, definitive, it would also be, I know, pretty uncomfortable, as they drill through a bone (hip, sternum, etc) to get at the marrow. I've seen it done; I don't want it done unless we need to. If I am lucky enough to dodge this bullet and, in fact, have just a leukemoid reaction, the white cell levels should slowly return to normal over time. I'm getting another blood count Tuesday to see if there is any major change. I also want to see if my liver is healing.

Yeah, I too, think that Dad's other medical problems probably had a lot to do with his demise, but CLL apparently progresses slowly, but variably. It can get you in just a few years, but if you're lucky, you might get decades. Not knowing what the final answer is going to be in terms of longevity could be a bit worrisome though, 'cause you don't know if you'll be around in a couple of years or not until a couple of years have passed. Kinda hard to plan your life out in any long term way when you can really only plan for a couple of years or so at a time.

Presuming I have leukemia, it puts a real damper on all our plans. I can't get health insurance anywhere else, so I'm going to be here for the duration. We likely can't plan a home for our land in New Mexico, as I might not be able to get care, unless I can figure out how to get hooked up with the TriCare system, which is the new name for the military health plan for retirees. That might be transportable anywhere I might want to move. We'll see.

Anyway, thanks again for your messages. We'll be in touch if anything changes or if there is any news. We'll let everyone know how Kathy does with her surgery next week.

Later,

Dave

The bad news.

Well, the "definitive" test came back positive. I think. This is the high tech "flow cytometry" that I can't figure out except that it somehow sorts cells based on their size or whatever.

I got a call today from my other internist, who's watching over me while my other buddy is off for a few days. He said the test was positive and he was putting in a referral to Hematology/Oncology.

But though what he intended to say was that it was positive, what he really said was that the test "was suggestive of a low grade chronic lymphocytic leukemia."

"Suggestive." Now, I was led to believe that the test was definitive. Suggestive? I guess they really aren't sure yet (here's some denial on my part, but hey, I still can hope that I have that leukemoid reaction; my understanding is that it could take a bone marrow biopsy (yeowch!!!)to tell the difference between a benign leukemoid reaction and leukemia. And I've also found out that leukemoid reactions can be associated with various immunizations! Remember the Hepatitis A shot? So there's still some hope, I think.)

Suggestive, and low grade. Well, that doesn't sound too serious, does it? I guess how serious it is remains to be seen.

I've put in some calls to Heme/Onc to see if I can set up an appointment in the reasonably near future, though unless I get special handling as one of the staff, it may not be too soon; I'm sure they have sick people to take care of before I come in so they can hold my hand.

As if it's not busy enough around here, with us chasing my lab values, most of you may not know that Kathy is having major surgery next Wednesday. She's finally getting rid of her uterus now that it's become a major, major nuisance on a regular basis. So, I'll try to arrange my appointment (if I can get one that soon) around my work schedule and Kathy's surgery and recovery. Jen is going to come out and help us for a few days after Kathy's surgery so I can go to work and pay the bills.

So, that's the latest. I'll keep on sending out these updates as any information comes in.

Like Mom said in a e-mail today, Dad had his leukemia for 10 years [ed: it was really more like five years, it turned out] before he checked out, and that was with 1970's medicine and all his various medical problems. This may be like most men's prostate cancer; they die with their disease, not from it. She doesn't think it'll take a day off my lifespan. So there's hope(?); I may still have the big stroke I've always ( as a migraine sufferer) worried about rather that checking out from my leukemia, if I really have it.

Stay tuned.

Dave

Hoping against hope.

Hi again guys,

Perhaps I was a bit premature and unnecessarily pessimistic in my note of yesterday. Yeah, the labs aren't looking good, but I don't have proof of CLL yet. That may be proven or disproven in the next few days as the flow cytometry is completed.

I'm still hoping against hope that this a "leukemoid reaction," a thought I mentioned in a separate message to Doug today. That's a pseudo-leukemic reaction one can get in response to a viral, or other, infection. The problem is, we haven't identified any other virus to account for this possibility. TB can cause it too. Hey, we were just in Mexico, maybe I picked up TB. I'd be HAPPY to have TB right about now. I got a TB test yesterday; so far it's negative!

Yesterday I was, for the first time, starting to read up on leukemia. Big mistake! First, I need to update my references! I pulled my pathology book off the shelf and started reading. When I got to the part that said "Death generally occurs within 3-4 years of diagnosis," I had seen enough. However, my pathology book is the same one I bought in med school, what, 28 years ago? It was probably written with data collected in the '60s.

Anyway, worst case scenario, if I have CLL, lots of folks live for decades with this condition, though some expire more rapidly. If I have it, it's very mild at this point, with my white counts being "only"18,000-20,000. Most leukemics have counts over 30,000 and up to100,000. And chemotherapy has advanced a considerable way since my archaic path book was written. By the way, my internist told me today that even if I have CLL, it's so mild, they wouldn't even treat it it at this point. I'm not sure what to make of that!

Anyway, I'll let all you guys know when I get an answer. If it's bad news I'll be seeing the Hematology/Oncology folks for an evaluation.They would be the ones to manage my disease at that point.

Thanks for all your thoughts and prayers. I appreciate your concern. I'll be in touch again.

Dave