Arnie’s Rebounding World: A Journey From Diagnosis To Relapse And Beyond

In March of 2006, I was 47 years old and thought I was on top of my game. I had a busy, thriving Ear, Nose, and Throat medical practice and a great wife and two kids, one in 8th grade and one in 5th. I was compulsively physically active, with a rigorous workout schedule. But something was not right.

Every Saturday morning, I worked out with a group of friends and began to notice that I was becoming short of breath more easily. Friends who I could usually outrun were blowing past me. I had daily headaches, rib and shoulder pain, but then I thought, who at my age and life style didn’t.

Not really very concerned, I thought maybe I was anemic and as a busy physician I ordered blood work on myself. The results came back with a mildly low red blood cell count and very high total protein. The results meant nothing to me, but I called a friend who was a hematologist/oncologist to run it by him. His voice was not reassuring, “We need to do some more tests.”

Within two days the results were back. He called on the phone, “Are you sitting down? We need to do a bone marrow biopsy, but the results look like multiple myeloma.”

That’s not possible, I thought. My only recollection of multiple myeloma from medical school was that it was a disease of old people. People like me don’t get cancer.

Within a few days, I was immersed in the world of multiple myeloma. My oncologist friend recommended going to the University of Arkansas to see Dr. Bart Barlogie. After a weeklong evaluation in Arkansas, I was diagnosed with Stage 3 multiple myeloma. I learned about the Arkansas Total Therapy 3 protocol with an aggressive up-front regimen of almost all of the drugs known to be active against myeloma followed by tandem (back to back) stem cell transplants and then two to three years of maintenance therapy.

I was overwhelmed. I lived in Tampa, Florida. How could I live in Arkansas for weeks at a time for treatment, with a young family at home and little if any support in Arkansas? How depressing would that be? How good could that be for my mental health and recovery?

In Tampa, we have Moffitt, a well-known cancer center in its own right. What was their treatment regimen? I flew back home and met with Dr. Melissa Alsina, the myeloma specialist at Moffitt.

It became clear that there were really two very different philosophies to the management of myeloma. The Moffitt approach (along with many others) was more of a measured, stepwise approach with a less aggressive upfront regimen and a single stem cell transplant holding the cells for a second transplant in reserve. Some of the active drugs were held in reserve to be used as they become needed down the road rather than given up front.

Which was better? Who was right? Both sides were passionate about their approach. Both sides had data to support their views. There was no clear-cut answer.

While treatment options have changed, expanded, and evolved over the last few years, this remains one of the earliest dilemmas facing the newly diagnosed myeloma patient.

For me, the decision came down to the ability to stay at home and be treated surrounded by family and their support. I was also more comfortable with the philosophy of a less aggressive approach and not using up all available bullets at once, knowing they might be needed later.

Thankfully so, because it turned out I needed those bullets much sooner than I had originally expected.

In this monthly column, I will continue outlining my journey with multiple myeloma, from treatment when I was newly diagnosed to treating and living with multiple relapses.