Keith, Follicular Lymphoma

I glanced over the report. “Right axillary adenopathy … atypical lymphoid infiltrate … combined morphologic and immunohistochemical…” I thought, “What is this gibberish?”

I looked at the doctor and asked, “Is follicular lymphoma a cancer?” He nodded, and said, “Yes.” Whoosh! In that moment my heartbeat skipped, and my stomach seemed in a free-fall. Cancer? How can that be? This can’t be possible. The doctor continued staring at me. No words.

As I broke the silence and began asking questions the general surgeon explained that I had follicular lymphoma, a form of non-Hodgkin lymphoma, a blood cancer, and that there was no cure. He detailed several facts, and then said, “You’re 47 and really quite lucky.” At that moment, I was thinking about this death sentence I had just received and my dashed visions of my home bustling with my children (as parents of their own) and future grandchildren. Lucky? What was he thinking?

14 years later, I still wonder about the poor communication skills of that general surgeon, and the repeated denial of the possibility of having cancer by my family doctor, but I do understand what the surgeon meant about me being lucky.

Over time, I learned of the typical, slow-growing (indolent) nature of follicular lymphoma, and the numerous medical treatments in-development for this common blood cancer. As I met many other cancer patients through my patient-volunteer activities, I unfortunately witnessed a number of those with less-treatable blood cancers relapse and pass away. I was lucky to have a less severe cancer, and a strong, healthy foundation due to my age, diet, exercise, family support, and ready access to affordable healthcare through my employee medical insurance.

My initial treatment was 8 chemotherapy rounds with 4 drugs, Rituximab, Cytoxan, Vincristine and Prednisone (R-CVP), to shrink the many tumors initially identified in the CT, PET and MRI scans. This treatment left me with peripheral neuropathy (pins/needles/numbness in my hands and feet) that diminished in severity over time but has not gone away more than a decade later.

After 4 months of R-CVP treatment, many of my tumors were eliminated, but several smaller tumors remained. Subsequently, I went through multiple infusions of the monoclonal antibody drug Rituximab spread over 2 years as part of a “maintenance” program.

At that point, I followed an annual watchful-waiting regimen that showed a slow progressive growth in my tumors measured by CT (computed tomography) x-ray scans. Finally, after 7 years my largest tumors had grown to a size of some concern and I had noticeable fatigue. A biopsy of the largest, active tumor was done by laparoscopic surgery. The tumor was involved with my intestine to enough extent that a portion of my intestine was also removed along with the tumor. Unfortunately, surgical complications left me in the hospital for a week before I could return home.

My anxiety was that the biopsy would show transformation to a more aggressive, less treatable lymphoma, but the test results still indicated my cancer as the “lucky” follicular lymphoma. Phew! Big relief, and I entered new chemotherapy treatment feeling confident.

By this time, the standard-of-care for follicular lymphoma had changed, and I went through a chemotherapy series of Bendamustine and Rituximab. I tolerated these drugs better than R-CVP, as expected, but my veins seemed to have never recovered from the Bendamustine. Since my B&R chemotherapy 5 years ago, successful insertion of catheters for blood testing and infusions has been extremely challenging; often taking up to an hour and requiring multiple attempts to get a cooperative vein. Repeated needle stabbings/probing are never fun for anyone but I have a phobia over needles (trypanophobia) and sometimes have a vasovagal response where I pass out – always lots of excitement from the nursing staff over my motionless, sweating body (blood pressure at 67/24, etc.). I joke to friends that it’s fortunate that when I faint I’m always doing so in the presence of attentive medical staff since they are the ones with the needles that drive my fear!