Thursday, January 15, 2015

Update from Little Rock

A mostly good-to-very-good checkup.


* It is FREEZING in Little Rock in January.  I never remember that and always pack as though it's going to be in the 60s.  Well it was 19 degrees last week and got as low as 30 last night.  Chilly!

* I remain in stringent complete remission.  No M protein, all markers normal except for IgM which remains low and is recovering post-transplant.  More on this below.   Most importantly, bone marrow is negative for any minimal residual disease -- the most sensitive test, of course.  I believe (though I'll need to check) that makes four random marrow sites over the past 18 months that have tested MRD negative.  A good sign, to be sure.

* The pits in my spine have not resolved -- they are unchanged from my previous scan, and number five, all sub 1cm and in the thoracic vertebrae.  I am going back on Zometa every other month to see if we can spur resolution.  Should that fail, I can likely look forward to fine needle aspirations of as many of them as can be reached with the needle (this was an issue before -- they have to go deep, evidently), and those aspirates subjected to MRD assessment.  We shall see.

* Insurance has, for the first time, been a real issue.  They rejected all scans.  I paid out of pocket for the MRI of the T-spine (ouch, to the tune of $1500).  I would have liked to see a PET and other MRIs but for now, no dice.

* I have experienced an uptick in Lambda free light chains -- they are still well within normal ranges but have increased steadily over the past year.  BB confirmed that this is likely just a sign of my immune system recovering.  Still, as FLCs increase before M protein does, it was one of those "this is probably nothing...BUT..." moments.  All that said, negative MRD trumps everything.

* I asked BB a number of questions.  Among them:  (1) Confirm that I did have cytogenetic abnormalities so that I can read the data to parse for my biology (yes, I did); (2) has my gene array returned to what looks like a patient without any MM whatsoever (work in progress); (3) is there a plateau among TT4 lite (too early to say but numbers do not appear to be plummeting, which I was worried about initially -- and in fact among those with my "subtype" (proliferation) there does appear to be a plateau; (4) should I get any other tests, like a heavy lite assay, to assess my condition or the depth of my remission (no); (5) are the rising LLCs cause for concern (likely just recovering immune system); (6) what should we make of the persistent former lesions in my spine ("why are those f*ckers still here?" he said as he looked at the MRI results...put me back on Zometa every other month, probably fins needle aspiration of remaining lesions in September to test specific marrow from those sites for MRD; (7) what is the plan for recurrence? ("I do not plan on recurrence."  me: "That's great, Bart, but I want to plan for recurrence."  BB:  "We would need to assess your biology at that time and look at whole genome sequencing and other analysis to inform our strategy at that time."

The upshot: steady as she goes, watchful and hopeful waiting, let's see if the Zometa makes those lesions disappear.


  1. Great news! Nice meeting you. Waiting for Dr B right now.

  2. Sound like good news Nick (except the insurance part). I laughed out loud at the recurrence conversation. Gotta love BB! I'm about to call to reschedule my first post-maintenance check-up. Also being Lite arm with unresolved lesions I'm getting anxious about it.

  3. Sounds like you're on track....congrats on the great workup! Rock on!

  4. Good news Nick. Happy New Year.!
    Mary Lou Z

  5. Wow, real bummer to hear about the insurance, but other wise glad to here about the remission

    Kristin @

  6. Nick! So happy to read how well you're doing. I check in on you often. ;) Hope all else is wonderful in your world.

  7. Great seeing you at MIRT the other day, Nick, wish we had more time to chat. All in all, we are two blessed amigos to be six years down the winding MM highway. Let's go for a bunch more!

  8. Nick, a couple of blips, but a good report. Steady as she goes. Hope to see you soon, Matt

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