Thursday, April 23, 2009

Chemo Day 1

This morning I called LabCorp to see if I could track down the H&E stain slide that they used for my original bone marrow biopsy (BMB) report. They could not find any record of me having a BMB in their database. I called my hemonc's office to see if they could provide me with their point-of-contact at LabCorp that they used to coordinate the original slide shipment. They couldn't find it. My hemonc's lab technician called LabCorp to see if he could make any progress, but LabCorp kept switching him back and forth and never connected him to the right person. Personal conclusion: LabCorp is a 3-ring circus and has a horrible electronic records capability. United Healthcare (my insurance) needs to switch to Quest Diagnostics. I'm going to write them a letter to that effect.

My hemonc did provide me with a copy of the original BMB report. In summary: "Hairy Cell Leukemia, extensive involvement (approx. 70%)." This means that 70 percent of my bone marrow is hairy cells. Although extensive, this isn't necessarily very high as far a treated cases of HCL go. It's not uncommon for patient's to have 90% involvement. My marrow still had plenty of "areas of preserved hematopoietic (stem cell) marrow present, including megakaryocytes (platelet precursors), erythroid, and myeloid cells. "Diffuse mild to moderate reticulin fibrosis [was] noted." These are strands sent out by the hairy cells that bind and pith the infiltrated marrow. This characteristic becomes more prevelant as the disease progresses. It will all resolve with the chemotherapy.

By the time I found the LabCorp pathologist contact information on the report, the other bone marrow core slides had finally arrived at NIH. My quest to find the original H&E stained core slide was no longer required, so Christi and I headed up to NIH. It took the better part of the afternoon before I was finally approved to enter the trial. I made one final trip to phlebotomy. Pete Townsend's "Give Blood" was playing in the background. Okay not really, but it was playing in my head. Once back in the clinic, I read and signed the protocol consent form and then waited to be randomized.

Randomized for Cladribine-only for the initial treatment with Rituximab to follow 6 months later at the onset of minimum residual disease (MRD), I was treated on an outpatient basis in the "day hospital". The IV insertion was easy. I had to wait with a saline drip while the initial prescription was filled. I verified the dosage rate, my mass and total dose in the IV solution at .15 mg/kg/day, 92 kg and 13.9 mg. The nurse set up the drip console settings, and I was off and running.

Treatment started at 5:25 pm. It took about 2 hours 10 minutes for all the Cladribine to drip into my veins, but I didn't feel any side effects or sensations. I ate while being treated, but the food was really awful, so when the treatment was over, Christi and I headed over to Jaleo to get tapas. (tapas always has a really good variety of gluten free low sugar menu items).

It's been 5 1/2 hours since Chemo started and, if anything, I feel as good or better than I did then. I'm sure the relief of not experiencing side effects has helped. I'm sure I'll feel worse in a few days.

Overall, it was a long but boring day...
and boring is good.

I'm hungry again...
and hungry is good too.

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