A Strange Year

When you are diagnosed with Stage 4 Non-Hodgkin’s lymphoma, the standard operating procedure is R-CHOP. It's a regimen where the body is subjected to three chemotherapy drugs, a targeted therapy drug, and a steroid. The treatment lasts 18 weeks, in three-week cycles. The steroid is given orally, and the other drugs via IV. Between sessions, the body is given time to heal while R-CHOP kills cancer cells. This is not pleasant for the patient. The treatment is accompanied by hair loss, numbness in hands and feet, nausea, and fatigue. My dad, during this process, worked out every day and never complained. It was just another problem to be solved, and he went about researching treatments and designing an exercise schedule. By the end of it, one couldn't tell he had cancer. He is quite simply the strongest-willed person I know. R-CHOP has a very high chance of success. For someone with large B-cell lymphoma, the chance of complete remission is 80%. My dad was not in that 80%.

In the past decade, a new wave of treatments has emerged to treat blood cancers, including lymphomas and some forms of leukemia. This is the CAR T-Cell therapy. The patient's T cells are changed in the laboratory so that they will attack cancer cells. Large numbers of the CAR T cells are grown in the laboratory and given to the patient by infusion. In the patient's body, the CAR T cells will continue to multiply and, with guidance from their engineered receptor, recognize and kill any cancer cells that harbor the target antigen on their surfaces.

CAR T cells cause severe side effects, not unlike other cancer treatments. While they lead to remission in around 50% of the patients, they have been shown to eradicate advanced lymphomas. In India, only three hospitals offered this treatment in 2024: Amrita in Kochi, Tata Memorial in Mumbai, and Adayar Cancer Institute in Chennai. Only IIT Bombay had the equipment to modify patient T cells. My father got admitted to Adayar Cancer Institute, which happens to be one of the best places in the country for any form of cancer treatment. Only around 300 or so patients in the country received CAR T cell therapy. My father was one of them.

The cancer survived the T cells. Initial biopsy revealed that the cancer was gone from inside the stomach, but was still present outside. It had reduced, but was still active. We want cancerous activity to be less than 3%. 0% would have been perfect. It was at 7.5%. After R-CHOP, the metabolic activity was at 11%. Before the start of CAR T-Cell therapy, the metabolic activity was at 33%. Between the end of R-CHOP and the start of CAR T-cell, the metabolic activity in the region had more than doubled. A PET scan taken a month after the end of CAR T-Cell therapy showed that the metabolic activity was now at 15%. The cancer was still growing aggressively.

The doctor recommended radiation and palliative care. In other words, there was nothing else to do, except to manage the pain and wait for the inevitable.

It's not appa's nature to just accept an answer like that. After a few more consultations with other doctors, he decided to go with yet another treatment, R-ICE. The R stands for the same drug that's in R-CHOP, rituximab. It's generally followed by a stem cell transplant. This involves collecting the patient's own stem cells, administering high-dose chemotherapy to eliminate as much lymphoma as possible, and then reinfusing the stem cells to restore the bone marrow. Similar to R-CHOP, there's a treatment cycle. Each cycle lasts 21 days and between 3 to 6 sessions. The chance of complete remission seems to be 38%.

It’s been 10 months now, with the first chemotherapy drugs entering his body in February 2024. My poor, long-suffering mother has been at his side throughout. Her social life has been severely curtailed, along with sleep. There’s no end in sight yet. During this time, my father's sister got diagnosed with breast cancer. Also stage 4. My mother's sister went through additional procedures caused by her own cancer treatment the year before, something that left her confined to her house. My project, something that I have been working on for a large part of my career, shut down. My wife went through her own career upheaval.

I don't particularly feel beaten. Could this attitude be an inheritance from my father? When I visit the cancer ward in the hospital, I see children going through chemo, and I see the old and destitute. Thanks to our insurance, much of our treatment is taken care of, something that can't be said for many people I encounter. I still have a job, and the wife has a legal presence in the country. We have our creative outlets, and a circle of friends who help lighten our load. Despite it all, my overwhelming sense is that things can always be worse.

What this year has brought into sharp focus is the fragility of life, of the things that we take for granted. The elders won’t be here forever. Every conversation is potentially the last conversation. Make time for them. Show that you care. The best way to do that is by being present and giving them your attention. Before one knows it, all that is left is regrets for things said and unsaid. The only balm is the knowledge that you did your best at the end and made the other person feel wanted.