Inspirational Stories

I was sitting alone in a stark, clean examination room on September 16, 2021, at the Dana Farber Cancer Institute (DFCI) in Brookline, Massachusetts when my oncologist walked in. I called my spouse and son on my cell phone so they could hear the results.

My doctor said that the PET-CT scan this morning showed that an area above my sinuses had grown some compared to the scan three months ago and also a small new spot lite-up on my liver. She also referred to the results of a recent biopsy of a polyp on the roof of my mouth that -- based on extensive cellular analysis -- showed recurrence of cancer with the CD20 protein. (Remember this as we will come back to it in a few minutes.) It looks like this is a relapse from previous treatments for a fast-growing B-cell lymphoma and should be addressed.

I asked what are the options for future treatments? She said that the Standard of Care for my situation and at my age was another combination of chemo drugs called PBN  (polatuzumab vedotin, bendamustine, and rituximab) over six cycles that could start immediately. Stem-cell transplant was out of the question because of my age (80), and the previous treatments would probably not work.

I asked what was my prognosis? Her response was a shock:  “maybe 12 to 24 months.”  The cure rate (CR) was only 30% meaning that there was 70% probability it could relapse.

This was the offered “next step” in my treatment.

I asked if she knew about “Mosun” or “mosa,” or “something like that?” She responded that yes DFCI had been involved in clinical tests of this new drug some time ago, but they were not involved with it now. The FDA hadn’t approved it yet. Further, she said there were no clinical trials available for me.

My drive home while talking to my wife was discouraging – I had basically received a death sentence on my life in the very near future.

…

This all began in 2006 when I noticed and brought to the attention of my Primary Care Physician (PCP) that my platelet count appeared to be falling steadily from year to year. As an engineer by training, I had developed graphs of several of my key blood counts for years such as red count, white count, hematocrit, hemoglobin, and platelets. If you only looked at the blood counts on that day you wouldn’t really see much of a problem – maybe some of the measurements were a little low.

However, when you look at the graph and the platelet count dropping down to less than 50 K/μL my PCP recommended that I see a hematologist/oncologist at Newton-Wellesley Hospital.

This specialist suggested I immediately have a bone-marrow biopsy, and he said he was very good at doing these and could do it the next day. The biopsy samples were sent to labs at Newton-Wellesley and also to a research hospital for detailed analysis and diagnosis. The results came back that I had  a slow-growing type of non-Hodgkin lymphoma. Basically, the lymphoma in my bone-marrow was crowding-out production of other cells; red cell counts, for example, were starting to fall and I was getting anemic even passing out occasionally.

I asked this doctor who was the leading expert on B-cell non-Hodgkin lymphoma in the Boston area, and he referred me to a highly experienced and senior doctor at DFCI who collaborated with me thereafter for many years as a second opinion.

They first started me in 2006 on a regimen of rituximab. When this wasn’t totally effective, then tried five cycles of fludarabine and rituximab starting in 2009. The disease disappeared until 2015 -- almost  six years in remission. However, it reoccurred and starting in October 2015 I began five cycles of R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone) the strong cocktail of chemo drugs that are traditionally infused for non-Hodgkin lymphoma patients. This was also effective until late in 2020 (about five years) when nasal systems and sinus problems started to appear. After PET-CT scans and a nasal biopsy were performed it revealed that the lymphoma had come back in a somewhat transformed state.

The latest therapy was then applied starting at Christmas 2020 when I was at Brigham & Women’s Hospital. CAR–T (Chimeric Antigen Receptor T-cell therapy) was the recommended therapy for my case that involves removing T-cells from my blood, sending these to an outside facility to “manufacture” modified T-cells with a cellular structure that can latch on to the protein CD19 on cancerous B cells, reinfusing the CAR T Cells in my body, and then letting them destroy cancerous B-cells. I had to be briefly hospitalized for the re-transfusion as one can suffer severe side-effects sometimes even requiring ICU care, but fortunately I didn’t have any bad reactions.

This worked for about nine months and my most recent tests and scans showed no cancerous CD19 B cells in my blood (success!) – however, cancerous lymphoma was growing but these were different – they insidiously “removed” the CD19, becoming invisible to the CAR T-cells, but retaining the CD20 protein.

…

After I went home not being thrilled about a short life expectancy that lay ahead, I put on my research hat that I use for work and started to look into monoclonal antibody “mosun” about which I had heard.

I first went to the federal website for ongoing clinical trials and was able to print out a number that might work. After checking against the criteria for eligibility I found one on-going trial that was being sponsored by Genentech (now owned by Hoffmann-La Roche). I called them directly in San Francisco and asked about the requirements for eligibility and also asked if there were any clinics or hospitals in my area around Boston where I could join the study. They put me in touch with nearby Lifespan Cancer Institute in Providence, Rhode Island. I contacted the oncologist heading up the clinical trial who was also a professor active with research at Brown University Medical School, and set up an appointment. In fact, because I had had multiple prior treatments that eventually relapsed and even the CAR-T therapy that was very successful in eliminating some of the cancerous B-cells but then relapsed, I was a particularly interesting candidate.

I also inquired directly into the potential costs of the clinical trial – and found there were virtually no out-of-pocket costs to me. Because this was an approved trial with an authorized clinic most of the costs are paid by the trial, including some scans, blood tests, extra biopsies, hospitalizations (if needed) and of course the monoclonal antibodies themselves. Medicare and Blue Cross-Blue Shield said they would cover any copays  or other expenses related to physician or nurse charges.

After meeting with the doctor and nurses running the trial, I was accepted and am now in Round 6 (out of 8 cycles.) They are getting very promising, although also very preliminary results with over 60% of participants with non-Hodgkin lymphoma achieving complete response --  if this pans out, it might be even twice as good as the Standard of Care at only 30%. I have had negligible side-effects, and the infusions following the rigorous protocol of monoclonal antibodies mosunetuzumab (mosun) and polatuzumab vedotin (pola) have gone smoothly. I will not know until later if this has gotten rid completely of the B-cell cancerous lymphoma until the final PET-CT scans are analyzed and hopefully the “lite-up” sites in my upper sinus area and on my liver have dimmed or disappeared. But I am feeling pretty good with no symptoms of lymphoma, my latest PET-CT scan showed no evidence of lymphoma,  and my oncologist and staff remain very optimistic.

What are the bottom-line messages from my experience?

(1) Never stop looking for the next steps in medical treatments and therapies. Even when you receive devastating results from highly experienced and competent cancer specialists that you trust completely there may be other things out there that can work for your particular situation. The medical fields in immunology and cellular sciences are changing so fast and taking place world-wide that there may be good options available although no single expert will be fully aware of them.

(2) Cancer is an incompletely understood disease and a living organism that wants to survive and reproduce just like Darwin hypothesized for all living creatures. It learns that all these advanced chemo drugs and therapies are out to irradicate it and just like other living organisms it changes by transformation, modification, adaptation, and mutation. It learns and remembers what has happened in the past and to avoid that in the present and the future. It is a race between the advancements being made in the sciences and the flexibility and adaptability of lymphoma to keep surviving.

Therefore, it’s important to always “Look Beyond the Next Step.”