My name is Barry Marchi, and I live and work in Sparwood BC, a small rural mining town in the southeast of the province. I had been battling my non-Hodgkin’s lymphoma since September 2015, and my first two lines of defense, chemotherapy and autologous stem cell transplant in January 2017, had failed. By September, my diffuse large B cell lymphoma was back and in October I received a call from my oncologist in Kelowna. She told me that there was nothing more they could do for me. She said that I was in the palliative pool and there were a couple of chemotherapies that would buy me some time, how much she wasn’t sure, and that I should make the most of the time I have left. I was numbed by the conversation and soon fell into a dark hole of loss and depression.
With the help of my two daughters, I sought personal counselling and started looking for clinical trials and treatments on cancer websites. For the first time I contacted the Leukemia and Lymphoma Society of Canada as I knew I could not fight this alone. I reached out to Megan Norrish, Community Engagement Manager, in Courtney BC, who very quickly shed rays of hope for me.
She referred me to Alissa Gentile LLS clinical trial specialist in Rye Brook, New York. She quickly forwarded me several pages of clinical trials I may have qualified for and in particular CAR T-cell therapies “chimeric antigen receptors” which was just approved the year prior in the United States by the FDA as a cancer treatment. Surprisingly, there was a CAR T-cell therapy trial starting in Vancouver BC at BC Cancer agency. My doctor from Cranbrook quickly got me into for a consult to potentially get into this trial only to be denied by the sponsor in the last minute after jumping through the hoops. This was devastating to say the least. I knew I had to do it on my own now and as my disease was progressing and only being suppressed by the quite regular radiation treatments and savage chemotherapy (27 cycles in all). I was going to try to get the CAR T-cell treatment and do whatever it took as time was of essence.
I contacted Alissa again and she sent me a list of recommended cancer treatment centers in the USA offering the therapy as medical treatment. In early January 2019, I was exploring the option in Seattle Washington at the Seattle Cancer Care Alliance and soon they were assessing my eligibility for treatment. Upon approval for the treatment consultation, navigating through the process was quite overwhelming - but with the help of Megan, Alissa, my family and friends, and Dr. Kieth Lowden my GPO in Cranbrook, the process was doable for me. At this point, I wasn’t sure if my out of country assistance would be approved by the province of BC, so I contacted my local MLA for his support in my endeavor. A local accountant gave me a financial plan and I began the process of liquidating my assets of home and pensions as the treatment was quoted to me over the phone as an out of country patient for US$1.1 million. “Wow,” my daughters only words were “we want you alive and broke”. Fortunately, my out of country assistance was approved in early March and I began to work out the logistics for my treatment.
A pre-PET scan revealed tumor activity and I went for my fifth round of radiation to BC Cancer agency in Kelowna in late May for three weeks of treatment. I returned home June 20, only to attend a golf fundraiser on my behalf put on by friends and family and was quite overwhelmed by the outpouring of support from the community.
On July 1, one of my caregivers and I flew from Kalispell Montana to Seattle Washington. After 90 days in the first class facility of the Seattle Cancer Care Alliance and the University of Washington medical Centre my CAR T-Cell therapy treatment of Yescarta was complete and I was heading home. My discharge diagnosis was a partial response to the treatment, not the complete response like we had hoped for, but was still a good partial response and it is the only reason for me to be writing the story today. For that, I am fortunate and grateful for and being able to enjoy every good day as best I can. I know that we must never give up “Fighting the Fight against Cancer”.