Hi Everybody!
If you saw my last post, you saw that my recent PET scan revealed that the spots on my skin and lung nodules in my right lung did not light up at all. But what did light up was a spot on the hilum of my lung, the precarinal lymph node that is nearby, and other lymph nodes in my chest. All other organs are clear. I was devastated. I have been receiving Keytruda since July 2015 and I thought I was on the path to being disease free. After hearing the results of the scan I began to think that things were no longer going my way.
Then, yesterday, I met with the pulmonologist my oncologist referred me to for a biopsy of the spot on my hilum and the lymph node. During my conversation with him he mentioned he had recently done the procedure on a woman who had melanoma. Then he told me this: "It turned out she didn't have melanoma. The biopsy revealed it was sarcoidosis.
When we got in the car I said to my wife, who is a registered nurse, "I've heard of sarcoidosis, but I don't know exactly what it is." She responded, "It's an autoimmune disease."
My ears immediately went up, knowing that Keytruda can sometimes cause autoimmune disease. Last night I Googled the words "Keytruda and sarcoidosis." Low and behold, I found two articles that mentioned recent cases of sarcoidosis have been identified in patients receiving PD1 checkpoint inhibitors. One patient was getting Keytruda, the other was receiving the ipi/nivo combo. I also found a medical journal article that said sarcoidosis can mimic lymphoma on PET scans.
So my biopsy is a week from tomorrow (Thursday). I'm trying not to get too optimistic because the letdown would be pretty bad. But now at least I know that whatever is going on isn't 100% guaranteed to be more cancer.
–Bill
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