Of 'Hole Pluggers' and Repeat Bone Marrow Biopsies
My sister consulted with her in-laws, who are both doctors. They said it couldn’t hurt, and it might help me achieve lasting remission.
Since I benefited from all the research that went before me, I believe that helping advance the science is the least I can do. But I would have liked to go into it being more fully informed, not about the medical terminology, but about the extra procedures that it would entail.
Enduring extra bone marrow biopsies
However, I had so much information to absorb in a short period, that I probably couldn’t have absorbed too much more at the time. I’m not even sure how I would have wanted them to tell me, but in hindsight I wished I had known, before it was happening, that the study involved extra bone marrow biopsies.
It is hard to describe how unpleasant this procedure is, despite numbing medicine injected into the area around your tailbone.
The first part, when they pull fluid out, feels like they might be sucking your insides out. The second, where they chip some pieces of the bone to get a solid sample, is an opposite sensation, of pushing down hard.
Bone marrow biopsies are a necessary diagnostic tool. You get them to find out what you have and to find out how you are progressing. I only realized I was getting more than I needed when someone said, during a clinic visit,
“This is the last bone marrow biopsy for the study.”
I shrugged it off, because what was I going to do, complain?
Looking back on my experience
The hole plugger was more than 10 years in my past when I found out what it was.
In 2014, when my transplant physician and nurse practitioner wrote about my case for a Dana-Farber e-newsletter called Advances in Hematologic Malignancies, I learned that it was PSC-833, or valdospar.
“The patient opted to participate in the randomized trial CALGB 19808, which was testing whether the P glycoprotein multidrug resistance (MDR) inhibitor PSC-833 (valdospar) improved outcomes for patients with AML under age 60,” they wrote.
I was 48 when diagnosed in 2003. That’s relatively young for AML.
They wrote the case study after I had had my fourth, and relatively rare, stem cell transplant. The headline: “Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia.”1
So what happened to the hole plugger trial?
According to a 2005 article in the Journal Blood, the publication of the American Society of Hematology, this portion of the trial ended “when PSC833 became unavailable after 302 of a planned 600 patients had been randomized.”2
Every time I re-read the case study about me, I’m struck by how close I came to dying when I was in the hospital for nearly four months after my second relapse in 2008.
Complications after my induction chemotherapy included: “multiple life-threatening infections, including pulmonary aspergillosis and cytomegalovirus (CMV) colitis with a related gastrointestinal bleed.”1
And for good measure: “Other complications included delirium and severe edema.”1
Dana-Farber got me through all that, so a few extra bone marrow biopsies pale in comparison.
Have you taken our Blood Cancer In America Survey yet?