I've now learned that a cancer diagnosis isn't always correct or final. It can change. And, sadly, it can get worse.
You may think you have a glioblastoma, but you don't. Next it looks like a lymphoma, but still nope. Then, a pathologist determines it's Small-Cell Carcinoma (SCC). So, you engage in some fairly unpleasant immunotherapy and chemotherapies in Singapore, begin to lose your hair, and start to have your doubts.
As I've mentioned earlier, SCC is generally lung cancer to start. Having it in my brain would generally mean that lung cancer has spread there. That said, scans still didn't show any signs of cancer in my lungs. It still looks like my cancer has somehow started in my brain and now started to spread elsewhere.
For what it's worth, I have zero history of cigarette smoking and a limited history of social cigar smoking that ended almost a decade ago. It was all very strange. It was so strange that we paid a second pathologist at a second Singapore lab for his opinion.
The second pathologist has said two things:
- He cannot determine my specific type of cancer beyond an umbrella family called Small-Blue-Round-Cell Tumor (SBRCT). This is challenging, as I cannot engage in specific immunotherapy or chemotherapy unless I have a specific type of cancer to target. (I do kind of like that my cells are blue, though.)
- He also considered it highly unlikely I have the SCC type of cancer I was being treated for. He would appear to be right about that.
I have done another MRI. Despite starting immunotherapy and chemotherapies for SCC, my brain tumor has grown significantly, "dots" of cancer in my brain have grown too, and I also have the lovely new development of cancer spreading from my brain to my spine. None of this aligns with my SCC drugs being able to tackle the SCC I was thought to have.
The spreading of my cancer to the spine is part of a lovely condition called Leptomeningeal Disease (LMD).
LMD is a rare complication of cancer in which the disease spreads from the original tumor site to the membranes surrounding the brain and spinal cord. When I say "rare," LMD occurs in approximately 3-5% of cancer patients. I'm still a special snowflake, folks.
The prognosis for LMD is generally poor, with survival typically measured in 2-3 months. Six months is generally considered the most that can be expected.
Death from LMD is generally due to progressive neurological dysfunction. I'm someone who has never felt tall, strong, or athletic. But, I've always loved being a thinker, planner, reader, writer, etc. So, I will admit neurological dysfunction ranks low on the ways I would like to go.
The only good option in Singapore for me right now would be radiation therapy. But, radiation is very hard on the body. Also, we would need to use radiation on my spine. This would likely leave me unable to use treatments like chemotherapy down the road that depend on healthy bone marrow for immune system function.
So, we are dropping everything and relocating to Manhattan on Friday. We have been in touch with Memorial Sloan Kettering Cancer Center (MSKCC) for some weeks now. It is our hope to engage with them quickly on any advanced options they may have.
For one potential example, MSKCC has the New York Proton Center. It may be that proton therapy could provide very targeted radiation treatment. (Proton technology will come to Singapore very shortly. But, it's not quite approved here yet.)
Obviously, this is hard news for me. I continue to appreciate the amazing support I'm getting from my wife, Francisca. She has been incredibly strong and resourceful throughout all of this.
I appreciate the amazing support I'm getting from my parents, brother, sister-in-law, extended family, and numerous friends. Your support continues to mean more to me and Francisca than I can express.
So, that's my latest update. I will continue to keep you updated here as often as I'm able. As always, my deep thanks for all of your love and support.