Friday, May 8, 2009

Not Responding!

A month ago I saw my response to the first cycle of DVD-R (Doxil, Velcade, Dexamethasone, and Revlimid) as positive and definitive. Kappa, which for my type of multiple myeloma estimates the overall tumor burden, had dropped by more than half in just three weeks. Such a strongly positive response to the first cycle suggested that future cycles would also produce good responses, at least in the short term; therefore, a successful end-game-delaying second bone marrow transplant had become a likely option! My surprise and delight were unambiguous.

But I was wrong.

Today, at the end of the second cycle, my kappa measurement is devastatingly unchanged from the first cycle (actually, it rose slightly, from 33.2 to 36.5). DVD-R might still be annoying the cancer but is no longer reducing it. This week there will be another bone marrow biopsy, but I don't expect it to meet the original goal of less than 10% plasma cell infiltration of the marrow. Had that goal been met, the prognosis for a second transplant would have been good. Now it is uncertain at best.

You'd think that with my track record I would refrain from making predictions altogether, but the one thing that is clear is that I've been whip-sawed back into limbo. Although the major problem with stem-cell transplants for multiple myeloma is that they aren't curative, the inability to reliably predict the benefit of the procedure to any given individual is a close second. Soon I may have to decide whether to undergo for a second time what has been called "the most punishing procedure in all of medicine" without the assurance that the benefit will outweigh the agony.


  1. I am so sorry to hear of your setback...for lack of a better word. No word can adequately describe this letdown. Stay strong, have faith, look towards tomorrow. You are in my thoughts and prayers.

  2. Lon,

    My onc always says... "1 number doesn't make a trend." I know he'll say it when my markers aren't what I want them to be, but I always make him say it anyways.

    Don't predict, don't panic. Get your tests, and see if the drugs can do their job. Keep the faith! My soul feels for you, and I'll light a candle and ask that the goddess look after you.


  3. Lon - it's discouraging, at best, to see numbers with teeth in them (as you aptly described) but perhaps there's good news waiting in the biopsy. I intend it to be so... and will send this positive energy your way to cheer you at least.

  4. Lon,

    I wouldn't be too discouraged with these results -- in lab-speak the 2 numbers are equal and this is still a good reduction from where you were. My kappa number dropped from 3000 to 657 from March to April and I'm hoping to at least see a leveling off when I'm tested tomorrow.

    Hope all goes well with the BMB.

    Janet (in Idaho)


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