A Survivor’s Triumph Over Double-Hit Lymphoma: Perseverance Is Rewarded (Part 3 of 3)

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

Click here to read Part 1.

Click here to read Part 2.

The “be calm, stay strong” mantra served me well in getting through the obstacle course.

One such challenge was during my first cycle in August of 2012: The incision from the spinal tap began leaking CSF, resulting in awful post-LP headaches. In this debilitating state, I had a brain MRI requiring me to lie still for 27 minutes while wearing a helmet (hello, claustrophobia!) as the machine taunted me with its cacophony of deafening bangs.

Fortunately, the blood patch the anesthesiologist performed (using my own blood to seal the leak) was successful. After that terrible experience, I opted to go with the Ommaya Reservoir.

The Side Effects

I was able to cope with the side effects from HDCT, but I could not get used to being in a hospital — reading and watching TV can only do so much to pass the time. I looked forward to hospital visits from friends and family, albeit infrequent. When I wasn’t in the hospital, I spent most of the time at home alone, bracing myself for skeletal pain (from the Neuopen) and neutropenia (critically low ANC), while aiming to keep dizziness, nausea and oral mucositis at a minimum.

Low WBC counts in tandem with the flu epidemic did not dissuade me from trying to live a “normal life.” I went out to do my own errands — grocery shopping, picking up refills at the pharmacy, making an occasional visit to the bank. When my ANC was near zero, I wore a mask in public. I made sure to do some exercise every day — at home and at the hospital — so long as my body could handle it.

The Home Stretch

In December of 2012, I had completed six cycles of R-EPOCH along with intrathecal chemo. The bulky tumor had shrunk considerably in the first three rounds, and the cancer was deemed to be in remission — great news!

Instead of “playing it safe” with two more cycles of DA R-EPOCH and CNS prophylaxis, I decided to go a more aggressive route as per the recommendation from a well-respected lymphoma clinician: two cycles of R-IVAC plus CNS prophylaxis, alternating with two cycles of very high-dose methotrexate (MTX).

This regimen was described as “consolidation” chemotherapy and was to be administered at staggered times in mega doses. IVAC was like a series of intense interval workouts with 14 HDCT infusions over five days; comparably, EPOCH was a slow, steady jog. To put it into perspective, nearly twice as much chemo was infused into my veins in one cycle of IVAC than in six cycles of EPOCH combined (and that’s accounting for a 75 percent increase in the EPOCH dosages from not having become neutropenic through the first three cycles).

In the face of adversity — headaches, nausea, visceral pain, dizziness, neutropenia, thrombocytopenia (critically low platelets) — I made it to the end, completing my 10th and final cycle in March of 2013.

The Journey

In all, I had more than 94,000 mg of chemo pumped into my body; 80 injections of Neupogen; 13 intrathecal injections of chemo, courtesy of brain surgery and a spinal tap; and six transfusions, including five units of platelets. What a journey!

Strength and survivorship are the hallmarks of a warrior. I am in great company with the many warriors who have battled cancer, withstood the treatment, and soldiered on with their lives. Positive affirmation and will power, along with support from friends and family, helped me get over the seemingly insurmountable hurdles. Throughout the treatment, there were many moments of individual levity and kidding around with friends. Having a good sense of humor can be therapeutic, a way to conquer cancer with a smile.