Wednesday, September 13, 2006

I'm A Mutant!

Greetings from Denton!

Some of you know that I was referred to the famous M. D. Anderson Cancer Center in Houston this week after my white count started climbing again. It hasn't gotten very high yet (only about 10,000) but my doc wanted another opinion on what we should do and when we should do it. So, he sent me to Anderson to be seen by Dr. Michael Keating, probably one of the world's most respected and knowledgeable people as concerns leukemia. I was very pleased to be able to have the opportunity to be seen by him. We got back from there last night and I thought we ought to tell you all about it. A lot happened.

We drove down there, arrived there safely and checked in to an overpriced hotel in central downtown Houston, about 8 blocks from the Cancer Center. It didn't even have free breakfasts, parking or Internet access! Anyway, we spent most of our first evening checking out the place, driving over to the Cancer Center, finding the parking garage, and even going into the clinic building and up to the eighth floor to see where the clinic was. You can't be too prepared, you know.

I've been excited about going down there, and feel privileged to be appointed with Dr. Keating, who is world-renown for his expertise in leukemia. But I have been worried too, since every time I get treated there remain fewer options for the "next time."

So anyway, the next morning, promptly at 7:30 AM we were there. Actually (and you knew this) we were there early! But our first appointment was with the business office to make sure that our insurance was all lined up. No problem! At the last minute (last Friday morning) our insurance, TriCare, had finally approved all the necessary stuff.

My doctor's visit was to be at 8:30 so he could decide what tests I was going to have. Well, we didn't get out of the business stuff until after that, but that wasn't a problem for us. We're in no hurry, we're retired.

We got into the doctor's office at about 10AM, but first the nurse went over all our stuff, asked questions, etc. After Alfreda was finished with me, Dr. Keating's assistant, Dr. Tan, an oncology fellow came in. A "fellow" is an internist who is studying a sub-specialty, in this case, oncology. He was a nice guy, an Aussie with an accent I had a bit of trouble with, and he had a bit of trouble with my speech patterns too. But, we did eventually communicate. He went over my records, asked questions, did a physical exam, etc. During all this, Kathy was with me, sitting in a nearby chair. At some point, Dr. Tan said, "We got back your IgVh gene that you had done in Denton, and it's mutated." Kathy heard this.

Now, it's interesting that they even did this test. It didn't exist until very recently.

When I got sick 4 1/2 years ago, I was diagnosed with CLL, chronic lymphocytic leukemia. That's the same disease my dad had, and he died of it in about five years. And my white counts were rising very rapidly, which is a bad sign. But in the intervening time, they've discovered that there are about five or six different types of CLL, based on your chromosomal abnormalities. And each different sub-type seems to act differently depending on the abnormality. So, I was tested for chromosomal abnormalities in Denver, about two years ago, and was found to have normal chromosomes, which is better than some abnormalities but, curiously, not as good as one particular abnormality. But with the average longevity of patients with disease being 6 years, if you select out the folks with normal chromosomes, it's more like ten years!

Then researchers found that having a particular protein, called CD38, on your leukemia cells was a bad thing, indicating more aggressive disease. I was tested for this in Denver also and am positive for CD38. Bummer. They have also discovered a couple of other "markers" for the disease; the IgVh gene and a test called the zeta associated protein 70, or ZAP 70 test. Just recently they've also found something called a beta microglobulin. The markers can help predict how aggressive your disease is likely to be and what medications might work best, but that's still being sorted out. This is really emerging science, hot off the press.

So, since I've been in Denton we've just been watching my white counts, which have been slowly rising. My doc finally decided to send me to M. D. Anderson since there is no consensus on what the best treatments are nor when it's best to treat. Since I was feeling relatively normal, and the treatments can be hazardous, he was unwilling (I think) to make the call on what to do next.

So, when Dr. Tan was going over me and told me the result of the IgVh gene test, it having been found to be mutated. Kathy was very surprised to hear me respond with "Great!"

It turns out that, counterintuitively, if this particular gene is mutated, you do MUCH better in terms of longevity than if you have the normal gene. When I later explained this to Kathy (after Dr. Tan left the room), tears welled up in her eyes. My ZAP 70 test was negative also, which is also a very good sign. And the beta microglobulin was low, which is very good. And that CD38 test, though it is positive, they've found in the last couple of years that if the levels are low, it's not too bad. My levels are low.

It's interesting that my IgVh gene is mutated. In most men, it's not. In fact, women outnumber men eleven to one in having the mutated gene, and consequently women do much better with this disease than the average guy does, in terms of longevity. I told Kathy that it's my feminine side coming out, and that's why I'm so sensitive and romantic (can you see her eyes rolling?).

This IgVh gene stuff is certainly no guarantee of longevity, and this curious disease that I have can, itself, mutate with time, to more aggressive types, but we'll take the good news when we can get it!

So, we saw Dr. Keating. I've been reading his stuff and hearing him talk (on line) for years, and I liked what I'd seen and heard. He is famous for being a "bear-hugger!" I told Kathy about this and said that since I was seeing him for the first time I'd probably get a handshake, but maybe I'd get a hug next time. But no...he came in, I extended my hand, but he ignored it and rapidly enveloped me in a bear hug! Then he went to Kathy and hugged her too.

He's a nice guy; easy to talk to, soft spoken, knowledgeable. He ordered a few more tests and asked us to come back the next day. We did.

The next day we met with him again, got hugged again, and went over all the labs. He went over all the prognostic tests he'd ordered, said I didn't need a bone marrow biopsy at that time, and that he'd like to follow me for, oh... about twenty years! Wow!! And he said I only needed to get blood tests about every three months ("Relax, you don't need monthly tests!") and I should probably come back to see him in, oh maybe, a year or so!

He also would like to hold off on any more chemotherapy for now because they're in the process of developing what essentially is a vaccine against a patient's specific leukemia, so that your own immune system can destroy the gremlins! If the immune system is damaged by chemotherapy, then the new method of going after the bad guys won't work as well. He said it'll work much better than the "bombs away" approach of old style chemotherapy, which destroys pretty much everything in it's path.

So, after planning for my demise in the next few years, it looks like I may be able to live long enough to spend some of my retirement savings. We'll see how this goes. It's just an amazing turn of events that I'm happy to share with you.

So, I'm happy to tell you that I'm a mutant...though several of you have suspected this for many years!

Thanks to all of you for your constant support and your prayers. Please pass this wonderful news on to your prayer groups for me! I'll keep in touch with you as things develop, though I don't expect much to happen anytime soon.

Until later,