COMPLETE REMISSION: Part 1.5

After 2005 auto transplant  |       After 2010 Allo       |      After 2011 DLI
                    Be sure to click on the photo for the large view.

Today, for the first time since early December, and with considerable assistance, I made it downstairs from the second floor (sixteen steps and a landing), got in the car, then went back upstairs. The went-backing part was considerably more difficult to accomplish than the go-forthing part. Yet I did reach a major milestone, because now I'm free of expensive non-emergency transportation services carrying me at scheduled times to places I don't always want to go. I can go to a restaurant or see a movie or ride over to Lake Miramar just to feed the birds. Automobiles have always meant freedom to Americans, ever since the Model-T Ford, and, now, I'm finally free again.

The first and second pictures are representative, but the third is not: for those two, all I needed was the photographer. Today, I had a physical therapist (PT) and Ivonne with me, along with a walker. Just out of view to the right is the wheelchair that got me to the spot. In truth, the only time I actually needed something to give me confidence, other than the razor strop the PT tightly cinched to me as if I were a horse, was when the wheelchair had to go down the front-porch steps, but it isn't cheating if I have Ivonne to help. I could probably have gotten myself out by myself through the garage, but what would be the point? I can't drive because of the steroids.

The photo also misleads in that I seem to look stronger in the third picture than I did after the allo. After the two transplants, I was much stronger than I am today: the GVHD of the donor lymphocyte infusion whacked me harder than my mom when she caught me smoking. There is also some nerve damage, possibly progressive, that makes doing everything arduous. I can't walk without mechanical assistance: I need a walker or a wheelchair, and, if the distance is too far, someone to push me. But at least now I can come to a standing position by myself if I have two good, high handholds and have enough sense to wait until my respiration is normal. Tomorrow will always be easier.

On the other hand, this is one of the happiest achievements of my recovery.

COMPLETE REMISSION: Part One

I haven't blogged since late November, but it's not because I didn't want to catch you up on what has happened since then, but rather because I have been physically and mentally unable to do it. Instead, I went ahead with a lymphocyte infusion from a second donation from my donor. The result has been largely unexpected, overwhelming, and quite improbable.

I wrote the whole story this week, but because of its vast length (my longest ever post, something over 2,000 words, so, of course, it had to be shortened if someone else other than myself wanted to read it) and its dark tone (recovery has been, and still is, difficult and dangerous), I'm going to serialize it for emotional consistency.

My allogeneic transplant from a matched but unrelated donor (also known as a MUD), did put me in partial remission, and gave me a year before progressing, a good year. Then came progression. When allos progress, they often progress rather quickly, and, usually, there's nothing that anyone can do to even slow them down: all chemotherapies are used up; something on the horizon that might help (but not now); followed by a predictable and swift end.

As I've alluded to, there is a rare procedure for myeloma, however, called a donor lymphocyte infusion (DLI), which, if it works, can resensitise the new immune system to attack the myeloma.

How often is it done? The Blood and Marrow Transplant Center at Scripps Clinic has been in operation for more than thirty years. In all that time, DLIs have been given to myeloma patients only three times. One recipient did survive for something like another ten years, but I believe the chronic graft-versus-host disease (GVHD) did not make that time pleasant. Another recipient didn't make it. I am the third. The procedure is almost always one in the context of a clinical trial, and should be.

Although almost routine for other cancers, such as for lymphoma, DLIs are often performed to insure that after an allogeneic transplant there is only one new immune system in the body, the donor's system, with no remnant of the original (a state called "full, or 100% chimerism"). In myeloma, uniquely, chimerism turns out to have no bearing on the outcome of the DLIs. Another reason DLIs for myeloma are rare is the result is not as predictable as it needs to be to be safe for myeloma: nothing at all can result, there's GVHD without an anti-myeloma effect, which can be miserable, and there's death from complications (e.g., liver failure, pneumonia, kidney failure, CMV infections, destruction of connective tissue, alimentary canal damage: the infusion can attack just about anything).

On the other hand, if I didn't do DLIs, my fate was clear and approaching. Me being me, with a history of phenomenal luck, and after reading the recent journals, I pushed hard to do it. It took some convincing.

There's no graft-versus-myeloma (GVM) effect without GVHD occurring in less than one hundred days (referred to as "acute" GVHD). After that, if GVHD occurs, it's called "chronic" and provides little or no benefit. So DLIs, when given, are often given at intervals (of several months or longer) to provoke the necessary acute GVHD response. The average time to ultimate response, if any, seems to be four to five DLIs.

There's part or me that didn't want to show you Grade IV GVHD. This is not me, I believe mine was grade III. My skin is red, but returning to normal after exfoliating, my donor must hate callouses, and my GVHD has attacked my liver, skin, and bowels more than anything else.

I calculated the odds from good data for achieving aGVHD on the first shot: less than %5. I expected that there would be no immediate consequences, negative or positive, of the infusion (we were looking for aGVHD to appear perhaps weeks later). In fact, it went down like this: I agreed to proceed on Monday, 28th November; the cells arrived by the next day; on Wednesday they were infused in the afternoon and I went home. By the next day I was admitted to hospital with a horrendous case of GVHD. They doped me with methylprednisolone, to suppress the reactions, which caused serious delirium. Apparently, I was unconscious but active, rolling my eyes around to no purpose, attempting to pull out my picc line (I succeeded on the first one), completely out of it. By that evening I was back in the ICU fighting for my life. I'll write about that shortly. Of all of four hospitalizations for myeloma, this was the most punishing. Several doctors thought I wouldn't survive.

Three Days after DLI

But I did survive, and after a few days I was back in my regular room, unable to do anything for myself. Two weeks after the infusion, I asked for a test of my light chains: I wanted to know if all of the suffering I had endured did anything to the cancer. A week or so later, the doctor who pioneered the facility brought me the results, but unlike the five lines I usually see, it was a full page of words. With my head full of steroids, which made reading difficult, I tried to understand what the report was saying: I knew the possible danger of reading into the words what I want to them to say, so it took three times through the realize that the report was saying complete remission. No sign of "extra" light chains. Further, every one of the three numbers was in the middle of the normal range. The cancer was gone. My luck still holds: I got the 5% result, and enough GVHD to fight the cancer without yet killing me in the process (at least, not yet).

I was stunned. When the doctor who has directed the Center for more than thirty years leaned over with a flashlight to look in my mouth, I said to him, "Do you mind if I kiss you?" This guy may be in his seventies, and I must admit it was fun to watch him try to react! He'll never forget me now. When he demurred, I said, "But you did hesitate!"

After that, I had no brain. All I could think about, when I could think at all, was my impossibly perfect outcome from a single DLI, and the sequence of events that led to it as well as the rapid consequences: immediate response, effective response, GVM, first try. With respect to likelihood, we scientist types like to use the phrase "vanishingly small," as in, "the probability of that event happening is vanishingly small." This refers to anything theoretically possible, but with a probability of occurrence so low that it would never occur in the real world. Many of these near-impossible events had to happen to get me to this point, which are on this blog somewhere below.

What do I do with that? The eternal question arises: why me? I feel, probably illogically, as if I have acquired a responsibility, but I'm not sure what it is let alone how to carry it out. In earlier posts I've detailed all of the unlikely events from which I've benefited, but this latest is overwhelming. The only thing I know I have to do is finish the book, even if I end up being the sole reader.

CR, on the average has just given me another multi-year lease on life without cancer: the present curves suggest five years or more. There is also a non-vanishing possibility that I'll never see multiple myeloma again.

Last Wednesday I spent hours in the hospital, as I have to do once a week. When they wheeled me into Hematology on my wheelchair, for some reason I was left in an open space for a time. During that time all but one of the doctors who had treated me walked by and said hello (the other one I saw earlier). I'm guessing it was a shift change, but it was then I began to realize that my survival is a huge triumph for the doctors and nurses, too.

Next post will tell you about what the DLI did to me and is continuing to me. I thought that after the allo in 2010, nothing could possibly be as difficult from which to recover. I was wrong.