Wednesday, February 8, 2012

Bad To Worse

Dave's Great Adventure
Quick Update
February 8, 2012

Just a quick update on what's going on with me. I'd been wanting to do another DGA but not enough info has been available yet.

I have been waiting and waiting to hear something, something, from M. D. Anderson. I've e-mailed repetitively and gotten some hints from Dr. Keating's nurse, but no definitive answer on what's happening next. I'm supposed to be enrolling in some new clinical trial. I'd like to know something about it.

Meanwhile, last Friday, I got a call from my local doc's nurse. He was ordering a kidney ultrasound because my creatinine had gone up a bit. I thought that was weird as I was wondering what they could possible see on a sono that might be causing it to go up a bit. Normal is about 1.0; mine had been about 1.2 to 1.4 recently, but now was 1.6. So I had the US done. It showed slight enlargement of the left kidney and "soft tissue masses" impinging on the bladder. As soon as that report hit my doc's desk, he ordered an immediate CT scan of my abdomen and pelvis...actually dragged me out of the tub the next morning to get back down to the hospital. He had to hurry as we're supposed to be leaving for Antarctica (a long way from any medical care) tomorrow!

So, we got down there, drank the lovely 24 oz. drink of "contrast, waited 90 minutes and had the CT. It took all of maybe 5 minutes.

The CT shows widespread adenopathy (either swollen lymph nodes [hopefully!] or a new tumor, a lymphoma) in my belly, along my aorta, around my bowel, and some up to 6-8cms in size (tennis ball to orange size) near the bladder. That's not good news.

Many calls went between me an my local doc and my local doc and Dr. Keating. They say nothing is going to change in the next 12 days so I'm free to go to Antarctica, but some stuff is gonna happen when I get back. I'm not yet sure what all is going to happen, but I did get a clue about the clinical trial.

I was thinking that the CT findings might represent what's called Richter's Transformation, a deadly form of lymphoma that can CLL morph into about 10% of the time. That would leave a predicted longevity of 6-8 months. But I guess my docs don't think so, as they're letting me go ahead, and they're still planning on enrolling me in the new clinical trial. If I had RT, I would probably need intense chemotherapy ASAP followed almost immediately by a bone marrow transplant.

But Dr. Keating says he still plans on enrolling me in the clinical trial when I get back, and I will be the very first on the list. He believes it will be approved by the end of this week. Great, but I still don't know what the trial involves. But...I'm Number One!

After we leave town tomorrow we will be out of telephone and, for the most part, e-mail contact until we get back on the 21st. So, I won't know any more until we get back to town, and may not know any more until we get back to Houston in late February. We have appointments on the 27th and 28th.

And that's all for now. More later.