Sunday, March 22, 2009

The End Game

I reached a significant milestone in November. I am now officially at the beginning of the so-called End Game. The term comes from chess, where every match is somewhat loosely divided into three phases: a formal opening game where initial sequences of moves (called "openings") have well-recognized names and can be found in books; a development section, where the objective is to gain every possible advantage (positionally, strength, and number); and the end game, where the King is won or lost.

My plan was has been for a decade to have a second autologous stem-cell transplant (aSCT) at time of progression after my first transplant (which was in September of 2005). The second aSCT would buy me some additional good time. I have cells harvested in 1998 just waiting for it.

In February, after six or seven months of Velcade, I was good to go. Except that the bone marrow biopsy revealed between sixty and seventy percent plasma cell infiltration of the marrow (normal is two percent).

At that moment I entered the End Game. The cancer, although not damaging to me at the moment, is progressing, resistant to some degree to every chemotherapy we've tried (e.g., Velcade, Revlimid, Cytoxan, Thalidomide), and, by some tests, is showing a higher-than-comfortable level of activity.

Not my arm, just an example
I know I'm not being physically damaged at the moment because a recent CT-Pet scan revealed evidence of healing in all the spots where the cancer was previously active except one on the seventh thoracic vertebra, and the activity there was no higher than it was on a previous scan in 2007. For those of you who are unfamiliar with multiple myeloma, the cancer eats marrow-laden bone from the inside out (e.g., pelvis, skull, spine, ribs) as it destroys the ability to resist disease.

The difference between the End Game and what comes before it is that the unpredictability of the future is greatly reduced. The cancer will progress at some point on the minimal treatment I'm now giving it (high-dose steroids on two consecutive days each week), and when it does progress it will be difficult or impossible to stop. Imagine a Champagne bottle with a part-way extracted cork and a snarling demon shaking the bottle! That's what I'm seeing today.

If I go ahead with the aSCT with my present level of plasma cell infiltration, there's a good probability that I wont benefit enough from it to balance out the agony of the procedure itself and the lengthy convalescence from it. Looked at from a quality-of-life (QOL) remaining point-of-view, my QOL might actually be reduced when comparison to what it might have been had I skipped the second aSCT, and my remaining life from today (they call that OS, or "overall survivability") might actually be the same or shorter. So instead of enjoying months of relatively good time before the final fight begins in earnest (when you'll start seeing the words "end-stage" or "terminal" on this blog), I would have suffered more than was necessary or beneficial.

When the cork does fly out of the bottle, I'll have little or nothing to hold it back. I don't think anyone can make reliable predictions, but if I had to guess, I'd say that the cancer will blast past the steroids I'm presently taking by the end of summer and that I'll survive about six months after that.

So we're going to try again for the second aSCT. That means, essentially, throwing the kitchen sink at the cancer in a last-ditch attempt to get the plasma cell infiltration down to an acceptable level (less than ten percent). The chemo will be brutal, probably involving a combination of Velcade, Revlimid, Doxil, and Dexamethasone, but if successful any damage or pain caused will be reversible and I'll gladly forget all about it.

Having a successful second aSCT will pull me back from the End Game for some length of time, probably for at least two more years. During that time I might be able to live a relatively normal, mostly drug-free life.

There would also be a reason to hope. There are no new drugs I am aware of that will become generally available in the next year or two, so without the aSCT, when the cork flies out I'll have nothing with which to fight but the drugs that have already failed. On the other hand, in two or more years there may be new treatments that could keep me going, or even enable me to have a third aSCT.


  1. Oh, Lon! So sorry to hear this...have you ever considered any natural MM fighters, such as curcumin, green tea, etc.? They can't hurt (although don't drink green tea if on velcade), are not unpleasant to take, and might help, at least a bit. Of course, many speak of the wonders of the Gerson diet. Perhaps a consult with a homeopathic M.D.?

    With all best wishes,
    Lisa Maxwell

  2. Lonnie,
    This totally sucks but I have a strong belief you will come through it. Dr. Jim Berenson is looking for participants in some trials he says are VERY promising. I think you have his number but if not, email me at and I will get you two in touch if you'd like. Also, he will be our guest speaker on April 11th in Riverside and he will be talking extensively about the new trials. This Saturday, the 28th of March, we will have Dr. Bob Vescio, about whom I can't say enough great things. The meetings take place from 11 a.m. to 1 p.m. and if you decide to go, please let me know and we can ride-share from my place in Murrieta (about 1/2 way to Riverside from San Diego).

    My heart goes out to you for what you are going through. You are very brave to put all this out to the world. I can see how it can be very cathartic (sp?).

    Please call or email me anytime you want to talk - I will always be here for you my friend.

    Very very best to you!

  3. Has anyone talked to you about the voronistat
    trial? Our doc has 30 MM trials running and this one is "blowing his mind." He had 2 patients whom he thought he had nothing left up his sleeve for them. They were resistant to everything. Both were put on voronistat and BOTH are doing well again. If you do a second
    SCT, has your doc thought about using busulfan
    with the melphalan to get as big a kill on the MM as possible? I met a guy last Nov. who had been doing very badly and thought it was the "end game" for him. He went into an auto with high numbers and did OK. He was doing very well when I met him. Just some thoughts.
    I think there are still some options here.
    Hang in there.

  4. Hi Lon,

    Is a mini-allo in the cards at all ?

    I appreciate your very thoughtful blog and wish you success in your next course of treatment.


  5. Medicare won't pay for an allo, mini or otherwise, alas, or I would be very tempted to take the risk. My brother is not a match, but the survivability from a matched unrelated donor today is much better than a few years ago.

  6. I added a link to my condition-monitoring chart this morning. It's with the other links on the right side.

    The key markers are rising, which is not good. Chemotherapy will restart next week.

  7. The chess game, by the way, playing at the top of the post, is the first game played in a modern tournament. From Wiki:

    The "Immortal Game", Anderssen-Kieseritzky, 1851

  8. Wishing you well with your choices now. A very well written and informative 'blog' I do enjoy it.
    Sincerely Susie Hemingway Moursi

  9. 9/11 Nukes - Radiation-induced cancers -

  10. Please try to be enrolled in a clinical trial of pomalidomide or carfilzomib. These are the two drugs with reported partial (at least 50% reduction of M spike) and complete (100% reduction of M spike) responses in patients with relapsed/refractory myeloma.


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