When last we left our hero (that would be me), he had just signed up for a Bexxar trial. It was going to consist of two doses of antibody, spaced...aw, heck, who cares what it was going to consist of at this point, because today, our hero finds out he's not going to be a Bexxar boy.
At about 10:00 am, I receive a call from the clinical trials nurse at Nebraska Medical Center. It seems my CD19 count, taken as part of my blood tests, is too high to participate in this trial. The trial requires a CD19 count between 50 and 350; my count is 771. So I'm not even in the ballpark.
However, the nurse tells me, I can enroll in a trial where I get either CHOP chemotherapy plus Bexxar, or CHOP chemotherapy plus Rituxan in a blind test. It's a good trial, and an important trial, I know. But it means chemotherapy, which is what I was trying to avoid with the other trial. Also, it only gives me a 50/50 chance of getting the Bexxar. Or, she offers, they'd be happy to work with me and try to convince my insurance company to cover Bexxar as a first-line treatment. Bexxar, it should be noted, is only FDA-approved for relapsed lymphoma, so using it first-line is considered "off-label." Do I feel it likely that my insurance company is going to want to do such a thing? Let's just say I won't be holding my breath.
"Wait a minute," I say. "My CD19 count is too high for one Bexxar trial, but not for the other uses of Bexxar?"
"That's right," the nurse replies. " The CD19 count was for that trial only. Typically, we don't even screen CD19 for commercial use of Bexxar."
Somehow, this doesn't make me feel any better.
Still, I'm a big boy. I can take it. This just means I'll go into Watch and Wait mode. I did do another CT scan in Nebraska, however, so I probably should just check on that.
"Okay," I say. "What about my CT scan? I'm sure it's not really any different than my scan from two months ago, but if you have the information there..."
"Let me find the radiologist reports," the nurse says. She spends some time leafing through the reports. "Okay," she says while reading. "Looks like your largest mesenteric node in May was 3.1cm. And last week, we found...it was just 2.5cm."
Ah ha. "So it actually shrunk a bit?" I ask.
"Maybe. Certainly no marked change." She continues to read. "Your largest para-aortic node in May was 2.5 cm, and in your scan last week...well, it's saying an 8cm node."
Pause.
"Did you say eight centimeters?"
"Yes."
"So it's almost quadrupled in two months."
"Well..."
"Could there be an error on one of the scans? Could I have several nodes lumped together, with the scan unable to pick it up."
"I'm just looking at the radiologist report. I don't have the scans right in front of me."
My mind is racing right now. I won't share what sort of race my mind is in at the moment. "Could I...could I get the scans sent to me, so we can compare them side-by-side?"
"Sure," she agrees.
This is nice, of course. I'll have the scans in my hot little hands soon. And my local oncologist I've grown to know and love promises he'll get me into look at the scans with him right away.
Still, for now, I'm living with the thought that this "slow growing" and "indolent" cancer I have isn't all that slow-growing in my case.
Did I mention this isn't my best of all possible worlds?








t-bone? what the hell!
t-bone? what the hell!
Being your mom I hung onto
Being your mom I hung onto every word. Your writing talents are god given. Though you wrote with a great deal of humor each word pulled on my heart and soul. You'll always be my little boy. From the very first moment you uttered those dreadful words I have wanted to take your place. But my prayers for that have not been answered! I have for some reason had a very strong feeling that you will overcome this trial and see Jillian graduate from college and walk her down the aisle. It's a peaceful feeling as though god has given me a sign. I think your experience will help a great number of people and perhaps another great book! We are so thankful that you have Nancy and Jillian beside you. Of course you will always have your MA and PA now and forever. Love you and keep up the good work and humor. Love you too Nancy.
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