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.

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.

Flying while Driving

Today, the day I was supposed to have my aSCT but couldn't, I restarted high-dose steroids. Dexamethasone is the best drug we have for myeloma, and one of the hardest to take. I hate it, but it comes with nearly every other drug we take. The larger doses drive me crazy.

If you like, here's a set of three posts I did years ago to the myeloma support group describing why I don't drive on dex. You may enjoy them.