A brief update for those curious about my status. After two cycles of ABVD treatments, I had an interim PET Scan to measure the efficacy of the treatment. Standard protocol for Hodgkin’s. The results came back mixed. The good news: the tumor had shrunk by approximately 50% and the cancer had not spread anywhere. The bad news was that part of the tumor still showed tracer uptake, meaning that cancer cells are still active. The brightness of this uptake was a 4 on the Deauville Scale. For above a 2 on that Scale, present treatment protocols evolve into a series of complex data sets and flow charts based on initial staging, age, etc. The clinical recommendation from my local oncologist was to put me on a much more intense regimen called EscalatedBEACOPP instead of proceeding with the planned 4 more cycles of ABVD. This to eliminate the cancer and reduce chance of relapse. Hey, I’m all for that. But it’s an intense routine. If ABVD is a bitch from hell, EscalatedBEACOPP is the bitch’s diabolical great grandmother who hitched a ride with Sam Neil on the Event Horizon to bring unimaginable horror to the corporal and psychological frames. I’m a skeptic, and the near and long-term potential toxicities of that treatment are freaky, so I got a second opinion from an excellent lymphoma specialist at MSK. This all in the few days leading up to Thanksgiving, no easy task, but made much easier once my local oncologist called the guy.
Bottom line from MSK was that I could either “take it on the chin now” with two 21-day cycles of escBEACOPP +radiation, or continue with 4 cycles of ABVD, probably eliminate the cancer, but have a higher risk of relapsing, etc. in the future. As one nurse at MSK put it, “You just need a little more love.” The way the information was presented, easiest decision I’ve ever made. Escalate me, captain.
The 21-day escBEACOPP cycles go like this:
Days 1 - 8, I have a variety of chemo cocktails, either via IV or orally or both. Days 1, 2, 3, and 8 are the worst.
Days 1 - 14, I take a high dose of Prednisone (turns out Prednisone would actually eliminate lymphoma tumors by itself, just not kill the cancer cells and they’d come right back).
Days 15 - 21 — my body tries to recover before the next cycle begins.
Throughout the entirety of each cycle, I take a litany of daily prophylaxis medications because great grandma Bea takes my immune system down to almost zero. There’s also a high likelihood that I’ll need blood transfusions later in the cycles because she steals a lot of your red-blood-cell count. Forget trips to the gym, avoid anyone who sniffs, wash hands always, remain close to soft horizontal surfaces.
What’s happening now?
Today is day 8 of the first 21-day cycle. As promised, it sucks exponentially more than ABVD. And on top of the sucky but bearable physical symptoms of extreme fatigue, nausea, constipation, and chemo-brain, there’s now a new psychological component. The prognosis is still good, MSK and local oncologist are both very optimistic about me going into full remission after this new regimen, but I’m a naturally distrustful and excessively observant human. My now foggier brain hangs on every word and takes exquisite note of each body movement, facial expression, glance, muscle twitch, tone of laugh, time between email responses from every nurse, receptionist, and MD. The act of letting go and trusting the professionals is not easy for me. But I must, the anxiety is real. Having the MSK Lymphoma specialist on my case and reviewing everything daily gives me peace of mind and inspires that much more confidence about this new regimen working.
Timeline
2nd cycle of escBEACOPP ends January 1st. Then a 2-4 week waiting period, then a PET Scan to both examine status and map the radiation area, then if all looks okay radiation for a time period TBD (3-5 weeks 5 days/week is one period I’ve been given).
This was a curve ball, no doubt. And the road ahead is rocky. Thankfully, I’m surrounded by family, friends, girlfriend, and cute dogs. I want for nothing.