Well, honestly, my reaction was that I was shell shocked. This took a number of days for me to process, and frankly I’m still processing the long term ramifications of this test result.
My bone marrow CLONOSEQ report came back. This is actually the first time the report was shared with me, so I got to read the full thing myself. This is the best, most sensitive test that can be done for myeloma, counting individual cells.
Zero cancer cells in 3,709,872.
This means I achieved a sCR or Stringent Complete Response from my Car-T procedure. It also means that I’m in complete remission from myeloma.
It was funny, it somehow, for me, has a similar parallel to being told “you have cancer,” which was such a gut punch. Now being told,
“You don’t have cancer”
“Wait, what?”
It’s been a long six plus years with cancer; I feel a bit astonished.
The CARTITUDE-1 and CARTITUDE-4 clinical trials just reported with the long term results of CAR-T Carvykti therapy results. 32 patients are still cancer free 5 years later (32 out of 97 patients, 33%), and doctors are starting to call them cured.
So I have a 33% chance to be cured of myeloma, something previously unthinkable. Of course I’m thrilled with the test result. But, I think it will be some time before the cancer nagging thoughts in my head go away. The question for all cancer patients, will it come back?
I’ve had the best test available for myeloma, and it didn’t find any. But, really, all the test said is I don’t have any in my left hip. Only time will tell if the myeloma has been wiped out or if there are a few cells hiding in my right hip or in a vertebrae in my neck.
“Try to live a normal life,” my doctor told me.
I find myself in between having future test anxiety and just not caring anymore (because I hate worrying and find it exhausting).
I was talking with my wife about my parallel and my dumbfoundedness. Her thinking was that I had an identity before life with cancer and then that shifted into an identity of a person who was trying to survive cancer. Now, maybe I’m a person who has survived myeloma, I’m going to have to reinvent myself again.
I guess the trick now is not to hold my breath, let time flow, and keep making the most of life.
Carrots Over Cancer 