Welcome to what has become our annual September melanoma treatment update. While we certainly aren’t overjoyed to be back in this spot, we aren’t exactly surprised, either. The BRAF and MEK inhibitors which Amanda started a year ago did pretty much exactly what they were expected to do: provide an immediate response and relief, lasting right around a year on average. The accompanying immunotherapy didn’t deliver a durable long-term response, but that’s also not a big surprise….that agent on its own had not been a home run shot when we used it as the first course of treatment in 2018.

So, this Spring we began both tracking some slow tumor growth in and around Amanda’s stomach; and also scoping out the next option for treatment through a clinical study. That led us to University of Pittsburgh Medical Center (UPMC), just over three hours down the road from our home in Columbus. UPMC has a great research clinic with a number of ongoing clinical trials; and a team led by Dr. Diwakar Davar with whom we have been thrilled to work. Dr. Davar talks about melanoma treatment using our favorite C-word, “cure.” We all believe together that the technology and science available will stop this disease and deliver the cure, the health and the freedom we desire with all our hearts.

(Oh, hey, would you look at that….a message of medical science delivering health and freedom. Seems apropos…)

Yesterday, one year to the day after the beginning of the last treatment, Amanda received the second of two injections of a new cancer treatment called STING (STimulation of INterferon Genes) pathway antagonism. In a nutshell, this therapy is designed to further boost the immune system’s ability to identify and eradicate the cancer by making the “cold” tumors appear “hot” again. This clinical trial will then follow-up with a familiar immunotherapy combination of Ipi+Nivo — so-called checkpoint inhibitors that lessen the body’s natural inhibition to attacking melanoma because of its deceptive protein/enzyme signature — over the course of the next couple years.

We are particularly excited about the return of Ipi+Nivo, as this combination immunotherapy provided the best response to-date in our melanoma journey. Following just three infusions of these drugs in 2018-19, we experienced 18 months of stable, treatment-free cancer. The addition of the STING agent should only boost the efficacy of the drugs. The downside is that Ipi in particular can be difficult for the body to tolerate….our prior experience also required us to forgo the planned fourth infusion due to Amanda developing acute hepatitis; and required hospitalization and steroids to reverse the effects on her liver. This current treatment protocol should be more tolerable with less frequent, lower dose infusions; and will be monitored very closely to identify and address any potential negative effects as early as possible.

All things considered, everything I have shared so far has been positive. But unfortunately, this has not been smooth sailing over the past several months. In fact, these have been the most trying and tumultuous times we have experienced since Amanda’s stage IV diagnosis. The location of the cancer in the stomach has created a host of issues, including discomfort, difficulty eating and fatigue from the blood loss associated with the tumor growth. We have been monitoring Amanda’s blood counts closely, and she has received several transfusions to boost her hemoglobin and give her back at least some of the energy she has lost. The preparation for the clinical trial itself wasn’t easy….it was a frequently frustrating pattern of waiting and pre-screening and evaluating and delaying and trying to collect the plethora of items required to begin, all while discontinuing the prior treatment and managing the aforementioned symptoms of the tumor growth. While we are not out of the woods yet, we are confident we’re on the right path to recovery with the strides we have made in the month of September.

It goes without saying — but we’ll say it anyway — that we couldn’t do all of this without a little (okay, a lot of) help from our family and friends. Thank you to everyone who has helped with Lennon, with meals, with errands and with the loving listening ears we have come to rely upon so heavily. We love you and are grateful for your irreplaceable support.

Finally, I’ll try as best I can to answer the question we get so often, “What can I do to help?” Give blood. We wouldn’t be anywhere close to where we are today without the generosity of donors who make the frequent transfusions possible. Trust science. We are here to tell you that miracles are being worked every day in the field of medical technology. If you are waiting for the seas to part and the skies to shine down with the voice of god, maybe take a closer look. The world is being blessed with healing and salvation on a genetic, microbiological level through the tieless work of the geniuses who are eradicating cancer and other diseases. Spread love.