In the days leading up to this I was navigating the murky waters of some pretty scary news. The biopsy that I pushed for had come back positive for melanoma. The rigorous biochemo therapy treatment that I had just completed had not prevented a re-occurrence and I was officially at an advanced stage of cancer. I had returned to MDACC in Houston to discuss the next plan and learned that not only was it back but the tumor was dangerously encasing an main artery in my pelvis and therefore inoperable. Also, the MRI showed a few more tumor deposits nearby. My list of treatment options instantly got a whole lot shorter and I was essentially sent back to Tennessee with fingers crossed that systemic immunotherapy drugs would buy me a little more time with my son.
The type of immunotherapy I started, two checkpoint inhibitors (Opdivo & Yervoy), were newly approved by the FDA, were expensive and were not well understood and - most importantly - were not likely to work! Though these drugs work on some people with mucosal melanoma to shrink or stop tumors and spread, there are many more for whom they don’t, or at least not for very long. For me- though it has not been without some pretty scary bumps in the road - in all that time I haven’t had any new metastases or spread. It almost doesn’t sound correct to say that out loud because it hasn’t been a straight path. There was a severe immune reaction caused early on by the treatment, requiring a reversal of my heightened immune state with high dose steroids and lots of worry when the tumor grew again, and again – even when I started one of the drugs again. However, we were extremely fortunate that, not only had the drugs stopped spread for that time, but they also caused the tumor to become operable. And we operated - leaving me currently “NED” (no evidence of disease). The hope is that I will have a clear PET scan next month and try a few months without any treatment at all. And then a few more.