Yesterday I already had had my check-up with Dr. Weitz and was waiting in the reception area for a day hospital nurse to retrieve me to set me up for my treatment, when Dr. Weitz waved her arms at me to come back into her office. As soon as I crossed her threshold, she simply said with a big flourish, “517!” “517?!,” I repeated for confirmation. When she nodded, I burst forth with a “Yay!,” to which she replied, “Yay is right!”
She was referring to my level of IgM, the immunoglobulin abnormally produced by the cancerous Waldenstrom’s cells. As with football plays and the tax code, certain numbers take on significance of their own. For me, the significance of 517 is that this is the first IgM reading that is lower than 50% of my diagnosis level of 1,200, meaning the sum of all the treatments thus far has bumped up from producing a “minor or partial” response to a “good or objective” response. To put it another way, my prognosis has improved from a five-year median survival rate to 10+ years.
This is all the more a milestone because after I was diagnosed, my IgM rose to nearly 3,400. It fell, but then a year ago while I was on Bortezomib, it started rising again at an alarming rate (normal is in the range of 40 – 230, by the way). Seven months into treatment and we weren’t looking at minor response; we were looking at no response. Given that trend line, the five-year median survival rate was shrinking down at a similarly alarming rate.
Depending upon what study you read, 40% of patients show no response to Rituxan, and Bortezomib was a logical choice for me because it has been shown to be more effective with familial patients like moi. Hard to say now what results have come from each of the three drugs I have now had, but plugging away with Rituxan has been working. I’m resigned/resolved to the schedule ahead: it will be another year before I’m done, four more treatments three months apart. But if this current trend line keeps up, I may actually get close to the top of the normal IgM range, which should buy me a good bit of time before I need any more treatment.
The adage in the WM community is to “treat symptoms, not numbers.” Some patients live with very high IgM numbers but without symptoms, so they “watch and wait” until they need to take action. Others have near-normal IgM levels but have debilitating symptoms which require treatment. What appears to be the case for me is that the Waldenstrom’s acerbated my congenital platelet dysfunction; the more the Waldenstrom’s progressed, the more depressed my platelet function became, dragging down other blood functionality with it. Yesterday’s lab results were the first showing all the blood chemistry and morphology normalized across the board. Other symptoms have resolved along the way, too. And all things considered, I recognize that my side effects have been mild and manageable. I’m even starting to get the hang of having curly hair.
One should take numbers and statistics only so far, but when dealing with so much that is unexplainable and uncertain, the data-crunching as related to the published Waldenstrom’s and lymphoma research has given me a comforting context for understanding where I stand in relation to the bigger picture.
517 has made me more accepting of today’s shakiness and headachey-ness. Tylenol and a good book from Barbara have been the order of the day, around clumps of office e-mails. I’m told it’s important to drink a lot of fluids afterwards, so my other occupation on these recovery days is to drink something every hour, on the hour.
Janet, who underwent major surgery a couple of weeks ago, and I have promised each other to both be back in action this Sunday to do the music for ward conference, her on the organ and me conducting the choir. What a pair we make! But it’s our culture to endure, and 517 is my hope, smiling brightly before me (name that hymn).
P.S. Enjoy Greg and Antoinette’s flowering plum blossoms along the driveway.