Saturday, January 28, 2012


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.


  1. Lon,

    Good news!

    You might have been "wrong", but you surely are STRONG.

    I'll continue to be with you daily in my prayers.


  2. You're a fighter, Lon. I'm so happy for the good news. Will keep you in prayer.


  3. I keep you on my Intending list and continue to intend you are healthy and well in every single cell of your being... and I send you Reiki on a regular basis as well... I am not giving up and you are not, either... I am also intending you are completing the book... suggestion - how about one side of the book being for the layperson (all the right side pages, for example) and all the left-side pages having all the data and medical information for the professionals or those who want to read the stats?

    Still waving the pom-pons (blue and white, boolah, boolah) for the Home Team!

  4. The book is not about multiple myeloma as such. It is an autobiography of the experiences I've had in life that might help the reader understand the strategy I use for fighting it. I after all start in 1954 when my grandfather died. The book is anecdotal more than it is tutorial. It needs to be about all difficult battles with cancer, not just mine, so the technical details are left to the blog, but my encounters with incompetent doctors are not.

    At heart, the book is how to make the best decisions for yourself, especially unclouded by fear. Fear kills. People avoid treatment for too long, or insist on too much treatment too soon, go into denial about how the clock is working against them. In the case of prostate cancer, fear predominates in the vast number of unnecessary prostatectomies.

    So, is there a way, if not to eliminate fear from the decision-making process even if it won't go away? I found one for myself. I tell you how I found mine.

    There's also a need within sufferers to find someone else to take responsibility for their care, some paternalistic figure who will take care of them so that they can attempt to avoid worrying about their fate. Sometimes it's a doctor who fits the mold, sometimes there's a retreat to religion (of every stripe).

    Some spend vast sums on supplements to their diets, which in myeloma, is quite dangerous (remember, fellow patient, that it's the immune system that is malignant: you don't want to boost it);

    I love you are intending me, and sending me Reiki.

  5. Dear Lonnie,

    I began following your journey soon after my my husband was diagnosed with MM back in Aug 2007. He lost his battle in May last year after much pain and suffering, but fearless and optimistic to the very end. I am so very pleased for you and wish you all the luck in the world in the years to come.


  6. I can assure you that you have more than one fan waiting for the publication of your book. You are brave. Enjoy the moment!

  7. WOW! WOW! WOW!
    Holy cow!
    What a story . . . What luck . . . What a blessing!
    Can't wait for the next instalment!

  8. WOW! WOW! WOW!
    What luck! What a story!
    Can't wait for the next installment!
    God bless you Lon for teaching us how to fight, your doctors for their wisdom and tenacity, your donor for her gift!

  9. I was so glad to see your post. I am so glad everything turned out well!Sylvia

  10. My goodness, what a post! This is my first time at your blog, and I must say, it's quite an introduction.

    "Miraculous" is a word that comes to mind, and I understand your inclination to search for meaning and purpose within the reality of this event in your life, and I think you are quite right to do so... and I hope you find and follow it.

    I myself am quite new to the whole Myeloma lifestyle (dx Jan 2011, and currently in remission - partial response - after an ASCT), and am very encouraged by what you wrote. Thank you!.

  11. Thank God! I have been thinking of you and praying for you daily! I hope I am as brave as you when the time comes.


  12. Fight on, Mr. Nessler, fight on...

    As a 10 year survivor, you bring hope tat regardless of what comes, there is a finite non-zero probability ("vanishingly small") that this life will not end prematurely, that the lessons myeloma teaches will carry on for years, and my soul will be better for it, and that, no matter what, we can survive.

    The blessings of the Lord and the Lady upon you, Lon.

  13. Honestly, Lon, your posts have me with my mouth hanging open in amazement as I read, literally. I have never read or heard a story of such endurance, nor one with SO many miracles. When it comes to fighting MM with everything, medically and personally, you are THE MAN! Healing vibes from Jersey to ya.


They spam, I moderate. When you send a comment, it will disappear for a bit until I am notified. It hasn't been eaten. On the plus side, I can now reply to questions or suggestions, if you have any, in the comments!