I am part of the 'Reluctant Members Club'...

Are we getting closer to certainty? Maybe. Here's the scoop...

I received a call a few hours ago from the Hematologist/Oncologicst from Vandy and he relayed two pieces of information. Firstly, he was irate that my Cytogenetics testing (to rule in or rule out Burkitt's) was still not complete and it would most likely be Tuesday. More waiting. Not sure what the hold-up is, but he assured me they were fighting those battles for me as best they can. Hmmm. I choose to believe him at his word.

Secondly, he said that based on the Pathology that Vandy completed, he had a recommendation for treatment that would be consistent regardless of what we learn next week about Burkitt's. He said that my Lymphoma has a 90+% proliferative rate. That means that the cancer is growing very, very rapidly. Most diffuse large B-cell Lymphomas have a 40-70% proliferative rate. Mine is closer to that of Burkitt's (high 90s) and therefore, even if it doesn't have the chromosomal anomalies of the Burkitt variant, it is still considered a 'high-grade' Lymphoma.

He was concerned that the standard R-CHOP chemo may not be effective against these aggressive, hyper-growing cancer cells. If we pursue the treatment consistent with Burkitt's (also a high-grade Lymphoma), then we would be covering our bases.

So what does chemo for a high-grade chemo look like? Well, it's pretty hard-core. It's called HYPER-CVAD. For the spelling bee champs out there, that's "rituximab with hyperfractionated cyclophosphamide, vincristine, doxorubicin, and dexamethasone, alternated with courses of high-dose methotrexate and cytarabine".

There are 8 drugs in the regimen. I would be in the hospital for 3-5 nights every treatment. I would need 8 treatments, three weeks apart. I would need a peripheral inserted central catheter, or PICC line, surgiacally implanted in my chest near my heart to take the IV. Dang.

The list of 'most common' side effects is longer than my niece and nephew's Christmas lists combined. I don't even know what half of these words mean: Myelosuppression• Hyperuricemia• Stomatitis• Nausea and vomiting• Neurotoxicity• Stomatitis• Vesicant• Cardiotoxicity• Hyperglycemia• Gastric irritation• Hemorrhagic cystitis• Alopecia• Insomnia• Constipation• Acute encephalopathy• Pulmonary toxicity• Pigmentation discorder• Diarrhea• Infertility• Hepatotoxicity• Fever• Cerebellar toxicity• Conjunctivitis• Flu-like syndrome• Typhlitis and necrotising colitis.

What I'd like to do, now that there appears to be a hint of art mixed in with the science, is seek yet another opinion from Emory and Piedmont on this approach. I'd hate to under-treat this. In the meantime, I found a great Leukemia/Lymphoma message board that will be a good resource for fact-finding from others in the reluctant members cancer club.

The actual phrase the Vandy doc used was, "If you can put up with the misery of HYPER-CVAD, you should." Misery, huh. Is there such a thing as joyful misery? We'll see.