Hello Goodbye Stem Cells
When diagnosed with multiple myeloma in 2011, I, like so many newly diagnosed patients, had never heard of this blood cancer. Also, like most others, I googled myeloma and was scared sh... out of my mind. Additionally, I read that typically patients would have an autologous stem cell transplant. A patient’s own stem cells are harvested, the patient is blasted by heavy-duty chemo and the stem cells then are reintroduced into the patient.
My local hematologist referred me to a facility near me to do a consult in preparation for a transplant. Me, my wife, and my mom spent all day at the facility, only to be told at the end of the day, that I didn’t meet their criteria for the transplant. Translation: My kidneys were so damaged by myeloma that there would have been a good chance the transplant and heavy dosage of chemo would permanently damage my kidneys and as a result damage the facility’s stellar success rate with transplants would be impacted.
Weighing my options
At this point, I had a couple of options. I could travel out of state to a myeloma clinic that would do a transplant or see one of two local myeloma specialists. It’s an understatement to say that these options led to a lot of discussion in my family. I opted to see a local specialist. One specialist was anti-transplant and the other was a more traditional transplant proponent. The transplant naysayer had the first availability and I went with him. I liked his philosophy regarding quality of life and getting creative with low dose treatment. Ten years later, I am beyond pleased with my decision.
Months after starting with my specialist, an appointment opened up with the transplant proponent. We decided to see him anyways, just to see what he had to say. He suggested a stem cell harvest and transplant. My disease was finally stabilizing, and I was feeling halfway decent. So I opted to do the harvest and have my stem cells frozen just in case they were ever needed. I didn't do the actual transplant.
Typically, the goal of a stem cell harvest is to collect about 10 million stem cells. It usually takes 2-3 days. 10 million stem cells are enough for two transplants. In five days, we collected maybe 4 million. I’d already been on treatment for almost a year, so my stem cells making capabilities were weakened. That collection was a miserable experience. You have a catheter placed on your neck one day and the next day, it’s being hooked up to machine. The only interesting thing in the process, was the prisoner in his orange jumpsuit, accompanied by 5 sheriffs, being hooked up directly across from me, while he was in leg and wrist chains. I learned he was donating his stem cells to his brother. I assume his brother wasn’t in prison. The officers and the prisoners had some good-looking food delivered to their bedside. For me and my wife, we had hospital food.
Should I keep my stem cells?
Fast forward to 2021. I’ve been on immunotherapy for 4 years and my disease is stable. I feel better now than I have since before being diagnosed. I have zero plans to do a transplant. But my stem cells remain frozen, 20 miles away from me. For the first five years, storage was free. Well, free if you don’t include what was billed to insurance. Now the annual storage bill comes directly to me. It’s not a lot: $450 a year. But I seriously doubt I have any use for them.
Last night, I was going to pull the plug on keeping my stem cells frozen. All I had to do was go online and cancel the contract. However, I got cold feet. I got a bit sad with the thought of my stem cells going away. They’re my stem cells. We don’t have kids, so what else do I have to leave behind? My Minnesota Vikings memorabilia? My collection of old tickets from sporting events? Sure, I guess. But that’s just stuff. My stem cells are real. They are a part of me. I decided I will ask my doctors what they think. I know with CAR T-cell therapy that T-cells are harvested. But these are different than stem cells, so if I ever did CAR T, my stem cells would still serve no purpose. Maybe I can get a small bag of cells and put them in my freezer. Or perhaps, I can put them next to Walt Disney upstairs on Main Street at Disneyland (allegedly).
I don’t know what to do. I suppose this is a good problem to have. I’ll think about it. Talk to my wife, talk to my doctors, and go from there.
How has blood cancer impacted you financially? (select all that apply)