The Joy that Dare Not Speak its Name

An allogeneic transplant from a matched but unrelated donor is the most punishing procedure in all of medicine. The procedure is especially punishing for multiple myeloma patients: a substantial fraction of us die, not from the cancer, but from the transplant itself (in their statistics, doctors refer to this as “Transplant-Related Mortality”). When I was first diagnosed, I read an article in the New Yorker about the transplant experiences of Courtney Stevens, a sophomore in high school, and Tamar Lowenstein, a corporate lawyer with three children, entitled A Healing Hell. I recommend it. (My experience was more like Tamar’s than Courtney’s.)

For many reasons, this January was awful. For one, I spent the month trying to accept the unthinkable — that I had endured the horrors of an allogeneic transplant for little benefit. Part of me knew that I once more had to adopt the mindset of someone who had only a short time to live. I also had to accept that a good portion of my remaining time would be difficult. I pleaded desperately with my doctor to tell me what I already knew, that the transplant had been a failure. Perhaps if he said the words, I could resign myself to that fact despite all the kicking and screaming that was going on in in my head.

I had good reason to try to accept failure. Look at this chart:

The blue line represents the outcomes for an allo from a matched but unrelated donor

Here is what the chart says:

“A multi-center study published in 2005 of 229 patients (median age 52 years) undergoing non-myeloablative HCT for multiple myeloma found a three-year overall survival of 41% and a progression-free survival of 21%.”

The chart says that less than half of us survive one year. Compare that dismal forecast to yellowish line, which represents the considerably better outcomes for a first-time autologous transplant.

But it gets worse. There is a vast difference between transplants performed for a chemo-sensitive individual and those who, like me, are chemorefractory. Our two-year survival is estimated to be only 25%. And to think I had the temerity to anticipate cure!

During my fight with myeloma, I have had amazing luck. Every one of a large string of obstacles to transplant had to break in my favor. No one has any right my kind of good luck. It’s irrational to count on it.

I steeled myself for the results of tests from blood taken on the 24th of January. The December results were depressing.  Although I was of type kappa, I was seeing a rise in lambda! I would tell myself over and over that the charts no longer showed a resistant cancer but, rather, showed a struggle between my new immune system and the cancer. They seemed to be equal adversaries in a tug-of-war. I thought, as my new immune system matured, it might become more effective in the struggle. I wanted to believe there was hope, but, deep down, I just couldn’t. Was it time to purchase that cemetery plot?

And then came this on the 27th:

Will you look at that drop!

I was stunned. Girded for the worst, I was staring at the best. Kappa was clearly crashing, while the other two measurements were headed in the right direction. Additionally, for the first time in I don’t know how many years, my metabolic panel was completely normal! Agape, starring stupidly at my paper in my hands, I was unable for a time to grasp what I was seeing. Although my CBC wasn’t perfect (my red blood count was a little low), I saw nothing to lose sleep over.

I almost missed one of the more significant results. For me, alkaline phosphatase has been, since the beginning, a reliable indicator of on-going bone damage. The number didn’t register at first because it wasn’t flagged. That’s because it was completely normal — for the first time since my relapse years ago! In December, my alkaline phosphatase suggested that the cancer was tearing me up. To prove it, I developed a compression fracture and was smarting from several rib lesions. The tearing up has stopped. Now I can heal!

Here’s my theory (as inflicted on my doctor):

“I think the crash seen in the chart is unlike one from chemotherapy. In that case, the chemo destroys a fraction of the sensitive cells, leaving the rest to reproduce and replace the sensitive population. In an allo transplant, the new immune system destroys some fraction of all the malignant cells continuously. This is a completely different mechanism. There are no immune-system-resistant cells. The only reason a cancer survives is that it can reproduce as fast or faster than the new immune system can kill it. The chart shows simple arithmetic.

“For example, suppose each malignant cell can reproduce once in a given time period (let’s call it a cycle). Then every cycle, absent a killing process, the cancer would double in size. However, if the new immune system can cut the number of malignant plasma cells in half each cycle, the tumor burden would neither increase nor decrease: the resulting curve would be flat. If the immune system destroys 3/4 of the total every cycle, then the cancer would drop by 1/2 each cycle. Which is why the reduction isn’t linear once it gets going (what goes up exponentially, goes down exponentially). For that reason, I don’t think the crash we are seeing is going to level out. The likelihood is that I’m heading for remission (at minimum). Perhaps even toward the C-word.”

Looks Like Cure to Me!

There’s nothing wrong with wishful thinking (that is, hope) when it is backed up by uncontradicted data. I can happily revel in it.

The heavy weight of defeat is lifting from my shoulders. The ordeal of the transplant was NOT a failure. OMG, I said to myself, I am going to have to find a way to send four children to college! My garden will have tomatoes this year! I don’t need a cemetery plot! My fabulous good luck does hold!

Today, no matter how carefully I listen, I can’t hear a fat lady singing anywhere.