Long Overdue, Newsworthy Update!!

Family and Friends – it has been almost three years since we’ve sent out any formal information on my struggle with melanoma. 

As discussed in earlier posts, in 2019 I was diagnosed with Stage 3, and was starting immunotherapy. During 2020 and most of 2021 I had a fairly long and wonderful period of time being “all-clear”. During this time I started a new job, we moved from our condo into an actual house in DC, we bought a minivan, and Eloise was born. Things were pretty awesome!!

Despite all of the great things happening in our lives, late last year I developed a small melanoma progression in my lung and lymph nodes. I completed another round of immunotherapy this past spring – this time a combination of two different drugs. The immunotherapy did not immediately work, and suddenly I had two brain metastases which were quickly treated with targeted radiosurgery. This type of radiosurgery is highly effective at resolving treated tumors, but it unfortunately is not a preventative treatment. 

In a sudden change of circumstances, the immunotherapy that I had stopped taking months before started to work, and my lung and lymph nodes started to clear up. I developed weird immune-mediated side effects that were bothersome, but were also great signs that the treatment was working. I had finally responded to treatment, and was eager to put this nightmare behind me.

Unfortunately, in early November I developed another brain metastasis, and several more in relatively low risk areas of my body (i.e. no major organs are involved). My Johns Hopkins team quickly referred me to Memorial Sloan Kettering (MSK), where I enrolled in this clinical trial. I just returned from New York, where I had the surgery required to create my treatment. The type of treatment that I’ll be receiving is called  “TIL” therapy. See this recent news report, which explains how the treatment works and provides some recent data on efficacy. I’ll receive treatment sometime in January, and will be in the hospital in New York City for about 3 weeks, and then nearby for an additional two to three weeks for monitoring.

I feel very fortunate to be on this trial. They are only admitting 10 people, and it was just approved the day after Thanksgiving. Based on the published results, and discussions with my Doctors, there is a decent chance I’ll have a curative result, with minimal risk of long-term side effects. At minimum, this treatment could help my immune system respond to subsequent treatments. 

Over the past several years, we have not kept up formal communication about this directly with friends and family, primarily because it seemed like things were constantly changing. Treatments available for melanoma patients like me are evolving and improving all of the time. The FDA approved a new immunotherapy last year, which I have not yet tried (Opdualag) and there are many newer phase 1 clinical trials that are evaluating different ways to harness the immune system to fight the cancer, including adoptive t-cell therapies, vaccines, improved immunotherapies, and targeted therapies that work against specific genetic mutations. All of this makes me hopeful that I’ll continue to have a lot of treatment options, even if this clinical trial isn’t the home run that I hope it to be. 

Arianna and I appreciate, so much, our friends and family for being there for us when needed, especially over the past 6 months. Even though things have been chaotic lately, we remain hopeful for the future. 

Love to you all

Jeff and Arianna