One year ago today we were waiting for the results of a FNB done on my wife's swollen lymph node. It came back "suspicious of melanoma", and thus began our journey in melanoma. Actually, it continued our journey. Two years earlier she had a mole removed from her back. It turned out to be melanoma, .74mm and unulcerated.
After a PET scan we learned that the melanoma had returned and was officially in a lymph node in her groin area. The doctors seemed to be happy that nothing else was lighting up, so we took that as a bit of good news. We were referred to Dr. Byrd, a surgical oncologist, at SCCA. At first, he was suggesting we talk to a medical oncologist about starting with drugs first and not surgery. The medical oncologist thought surgery first was the way to go so that's what we did. She had a CLND on May 4th, 2017. Other than the enlarged node, one other had a few cancer cells in it.
She started Pembro in late July and did pretty good with it. In November, her MRI had some nodules in her lung that the Doc was worried about. They did a needle biopsy and that came back negative, which we took as great news but the Doc said false negatives were rather common. So, another MRI was done in December and all of the nodules were either gone or had shrunk dramatically. The Doc felt pretty good that they were there because of an infection and were not cancer.
In December, my wife's work group switched insurance carriers and thus began our ongoing battle with Kaiser Permamente. They would not cover Pembro, so we switched to Nivo. So far her big side effects have been nausea and occasional headaches. Her next scan is later this month, so scanxiety is starting to kick in a little bit!
We feel good that the PD-1 drugs are working and that we'll be able to keep the BRAF drugs in our pocket for awhile longer.
It's been so wonderful reading many of the posts on here. Thank you all for sharing your story and for giving us hope. I'll post when I can and share the ups with the downs. I know there are new drugs coming online quite often, I hope we can find something that maybe won't cure melanoma, but will at least put it into quite mode and make it managable.
I worked at the Leukemia & Lymphoma Society for 10 years and used to tell people how amazing the research and drugs we were helping fund were and how they were helping with so many other diseases and cancers. Sure enough, some of those drugs are now being tried on melanoma.
Keep up the good fight everyone!
Jeff and Amy
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