Time to cut the rebirthday cake to observe my stem cell transplant
Oct. 17 is the 7th anniversary of my multiple myeloma treatment
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Note: This column describes the author’s own experiences with autologous stem cell transplant. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Break out the party hats! Light the candles! Time to celebrate my rebirthday!
Oct. 17 is the seventh anniversary of my stem cell transplant (SCT). We call it a rebirthday because an SCT is a fresh start for a patient’s blood and immune system.
There are many treatments for multiple myeloma now, but SCT is still the standard of care. And it may be a scary standard. After all, the list of potential side effects ranges from the unpleasant (gastrointestinal) to the painful (mucositis) to the outright dangerous (infection and fever).
It can be reassuring to hear about actual experiences with SCT. So before I cut the rebirthday cake, here’s mine, with the warning that everyone’s experience is different.
Unspectacular preparation
Televangelist Robert Schuller said, “Spectacular achievement is always preceded by unspectacular preparation.” I don’t know if that’s true, but my SCT preparation was unspectacular.
My heart and lungs were tested to make sure they were healthy enough. I also had another bone marrow biopsy to check my cancer status after induction. The verdict: Very Good Partial Response. “There are a couple of levels that would have been better and a couple that would have been worse,” I explained to friends and family in an online journal. “We’re still all systems go for the 17th.”
‘Things I’d rather not experience ever again’
An SCT is a big procedure, but I was surprised to find everything leading up to it takes more time and effort than the SCT itself. I had to get a Hickman line to receive meds and the stem cells. Shortly after I got it, I put it on my list of things I don’t want to experience again. It hurt!
“If I raise my right arm… OUCH!” I wrote. “I’m told it will get better over time.”
Eventually it did stop bothering me. The line came out a few weeks after my SCT. The small scars it left behind are the only visible evidence of it.
What goes in, what comes out
Prep work also included daily shots to stimulate production of stem cells, and another treatment to move those new cells into my bloodstream, getting ready for apheresis — also known as stem cell harvesting.
In apheresis, my blood went from the Hickman to a machine that separated the stem cells before returning the rest to me. They scheduled me for four hours a day over four days, but I got 16 million cells in a single session, enough for several SCTs. The cells went “on ice” for the transplant, and I got an unexpected extra stretch of days free from hospital visits.
After months of going in and out of clinics and labs, it was strange not to have to be someplace every day. Until Oct. 15, 2019 — Melphalan Day.
In my journal, I described the chemotherapy drug melphalan as “sort of a friendly fire situation. It kills the bad cells, but doesn’t recognize the good cells either. So all my blood cell counts will start dropping.” I also noted “incredible tiredness” as my worst symptom with melphalan. “Knock wood that things keep going smoothly.”
‘Is that all there is?’
After months of treatment and tests, it all came down to 15 minutes. That’s how long it took to reinfuse my stem cells on Oct. 17, also known as Day 0. “It seems a little anticlimactic!” I wrote.
On Day 2, I wrote that chocolate cake didn’t taste good, but bacon did. “Wonder if I can live on that for the next week?” I asked.
After that, there’s a long blank span in the journal, until Day 11 when my hair fell out. I remember getting diarrhea and losing my appetite. But even more than that, I remember being terribly bored.
Medical experts and other patients will warn you about the physical hazards of SCT. But rarely does anyone warn you how boring weeks in the hospital can be. At one point I asked the nurses if they could just knock me out until my blood counts recovered. Of course, they couldn’t. But then again, if “boring” is the worst thing I can say about a hospital stay, that’s pretty good.
An unexpected delay
Around Day 12, I started getting fevers at night. It was engraftment fever, meaning my stem cells were doing what they should. But it also meant an extra day in the hospital before I could go home, which is a story for another column.
Some patients ask me if I would do another SCT, considering all the treatments now available. My specialist says it is one of my relapse options, and I wouldn’t hesitate if he considered it the best one when the time comes. I still have about 12 million stem cells on ice!
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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