A Survivor’s Triumph Over Double-Hit Lymphoma: Reality Sets In (Part 1 of 3)

This article series was written exclusively for LymphomaInfo.net by Jeff Permuy, JP_NHL on this website and SupportGroups.com.

The journey, having started earlier in the year, culminated on a raw autumn Sunday in New York. It was Nov. 1, 1998.

I was challenged physically and mentally every step of the way. The reward for all of my hard work was in finishing the NYC Marathon with a personal best time of two hours and 51 minutes.

The next year I overcame a badly sprained ankle, two months before the Chicago Marathon, by finishing the race and setting another personal best of two hours and 42 minutes.

It is no easy feat to complete a marathon, much less a sub-three hour time — it takes determination and lots of training. Having achieved the goals set for myself when I started running, I decided to hang up my racing shoes in June of 2000.

Unbeknownst to me at the time, several years later that whole experience would afford me with the mental fortitude and physical stamina to conquer the biggest challenge of my life.

The Beginning

In the spring of 2012, I began experiencing gastrointestinal discomfort and lower abdominal aches, at times radiating to my back. I later described it as “a cinderblock suspended in gas.”

Despite my high threshold for pain and reluctance to see a physician, I went to my gastroenterologist who scheduled me for a colonoscopy and a gastroscopy. The heartburn pills he recommended had no effect.

The painful episodes were increasingly intense and barely manageable, so I decided to see a colon surgeon. During the examination, the doctor felt a “discreet mass” near my lower left abdomen. He ordered blood work and scheduled a CT scan.

The computerized X-ray confirmed a large mass in my mesentery — a cavity adjacent to the small intestines behind the abdominal wall filled with nerve fibers, blood vessels and lymph nodes. The presence of lymph nodes in close proximity to the tumor concerned me. The “C” word crept into my head.

The Diagnosis

I would have two more CT scans and a PET scan over the next three weeks. By plotting the dates and measurements of the bulky mass, I calculated the exponential growth of the tumor: It was doubling in area every 13 days!

A week after the first scan, a CT-guided core biopsy of the abdomen was performed. The next day, the doctor shared preliminary results from the biopsy: The tumor was malignant, and I had lymphoma.

There was no time to be stunned by the news; I needed to schedule an appointment with the oncologist and listen to what the doctor had to say. In the meantime, there was the pathology report:

A method called flow cytometry identified the soft-tissue mesenteric growth to be consistent with B-cell non-Hodgkin’s lymphoma (NHL). A molecular cytogenetic test, using fluorescent in situ hybridization (FISH), revealed significant concurrent chromosomal translocations: mutation of BLC-2, associated with diffuse large B-cell lymphoma (DLBCL); and c-MYC, linked to Burkitt’s lymphoma (BL).

When I met my oncologist for the first time, he cut through the medical jargon in the report and told me I was diagnosed with a very rare and highly aggressive type of NHL known as “double-hit” lymphoma (DHL). It really hit me when he went over the treatment for high-dose chemotherapy (HDCT): eight cycles of dose-adjusted R-EPOCH plus CNS prophylaxis (intrathecal chemotherapy as a blockade so the cancer does not escape to my Central Nervous System). Could the news get any worse?

Click here to read Part 2.