Failing forward
I tried and failed a stem cell transplant. Twice.
I was told to go home and that there wouldn’t be a third attempt. I wasn’t sure how I felt about abandoning my efforts, as there may be a 1.5% chance of death from a treatment-related complication[i] and (assuming survival) the recovery time can take months or years… not to mention transplant patients are further at risk of developing new cancer from the procedure.[ii]
I volunteered to participate in a clinical trial because my disease is rare and the more data that can be gathered, the better the chance that future victims will have the most suitable options for care. The participants included patients like me for whom “no evidence of minimal residual disease” (remission) had been achieved. We were randomized into one of two groups: those who moved forward with the transplant and those who skipped the transplant and went straight into a maintenance routine. I was randomized into the group scheduled to have the transplant.
An answer being sought in the trial was “can a mantle cell lymphoma patient in remission afford not to have the transplant?”
The process for the transplant is three-fold: stem cell collection, followed by chemo that lays waste to the bone marrow, and then the cells are returned to the body in order to rescue the immune system. I didn’t make it past the collection step.
For my first week of attempts, I walked the several blocks to the hospital carrying my laptop, a book, and a cooler of LaCroix. I made myself useful including writing about prompt engineering. I amused my nurse, Andy, with my frugality. I watched other patients come in, achieve their goals of collecting stem cells, and leave before me. Every night, I would then receive an email with the results of my donation which were woefully low.
I walked to my friend Joe’s house after I was done donating one day and I nearly passed out. He rushed me back to the transplant house in his lovely convertible, much to the awe of the patients sitting on the stoop.
By my second week of attempts I was too weak to carry my backpack, let alone a cooler full of water. I continued to watch other patients come in, achieve their goals of collecting stem cells, and leave before me. Every night, I would then receive an email with the results of my donation which remained woefully low.
On my last day, I woke up in a pool of blood that had seeped from the hole near my heart. I couldn’t stop the bleeding. Charlie rushed me to the hospital while I applied pressure. I then stumbled down the corridors alone while he parked the car. I tried to hide the mess under my jacket. My arms grew weary while I continued to apply pressure. I was finally able to relax on a gurney when a nurse laid a sandbag over my chest. The sandbag was surprisingly soothing. I was feeling much better within thirty minutes.
My doctor concluded I should not continue my attempts at a transplant. I packed up my belongings with a feeling of defeat and drove to my home 90 miles to the north.
I began to gather strength as the weeks passed. Much to my delight, my hair started to come in with adorable little curls.
Please recall that one of the questions the clinical trial was trying to answer was “can a mantle cell lymphoma patient in remission afford not to have the transplant?” (and I had no evidence of minimum residual disease, aka remission).
The transplant had been considered a “belt and suspenders” level of protection because MCL virtually always comes back. When it comes back, it does so with a vengeance. The transplant was believed to keep a patient in remission longer despite the dangers of the procedure.
Shortly after I returned home feeling like a failure (well technically, I was a failure) the clinic trial was closed to new patients. The trial wasn’t expected to close until 2027[iii] but interim analysis provided an answer they sought: the transplant added no value for patients like me. The researchers announced the findings at the American Society of Hematology Annual Meeting held in December 2024.
“Patients with no detectable cancer after initial therapy for mantle cell lymphoma (MCL) did not experience any survival benefit from undergoing a stem cell transplant compared with maintenance therapy alone” Specifically, [with] “a median follow-up of 2.7 years, the overall survival rate was 82.1% among those assigned to receive a stem cell transplant and 82.7% among those assigned to maintenance therapy alone.”[iv]
Well hot diggity dog.
All the time I spent thinking the transplant failure was a negative when in fact I was failing forward. I avoided the months/years of recovery and the risk of transplant-related subsequent cancers. Phew.
I’m back at work full time and am having maintenance cancer treatments every eight weeks at the Mayo Clinic. I typically pull my hat down over my eyes and sleep like a cowboy during treatment. For the remaining seven weeks and six days between treatments, I cherish every moment because I’m alive and feeling well.
