Thursday, March 14, 2002

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.