The finger-spine-shoulder-reimmunization-maintenance update!

Phew, that’s a mouthful.  But I figured one day I (or others, perhaps) might want to search for some of these key words so I threw them all in there just for kicks.

It’s been a busy stretch at work the last couple of weeks — finally coming up for air here and thought I’d post an update on a few things.

First, my finger.  Still pretty sensitive and still some numbness both with the index finger and the thumb.  No real change there.   The finger looks better, but still pretty ugly.  It’s been nine weeks today, I think…and I can’t really say it’s “healed” as there is still some ugly looking flesh there.  Essentially it’s going to look rather unappealing aesthetically.  But as I remarked to somebody, if five years down the road I’ve beaten Myeloma and the worst that happens is I lost an inch of height and my right fingernail, it’s a small price to pay.   One day I might consider a skin graft to make it look a little less creepy…but I don’t want to do that until

On the beating Myeloma front, a couple of things.  I’ve found the Velcade is more and more difficult to tolerate.  My body is getting sick of it.  Mind you, I’ve been on a 30% higher dose than normal, even for Arkansas standards.  The rationale for this is (a) the “proliferation subtype” of the disease I had which is a hallmark of aggressive disease, even though I have other “subtypes” that mitigate the risk somewhat, and (b) the fact that this darn 4mm formerly-active lesions in my bones haven’t gone away yet.  So I stick with the heavy Velcade dosing and also monthly Zometa, and we’ll do another MRI in September.

I have been doing physical therapy for my shoulder (I can’t recall if I even posted this here, but the Dex atrophied the muscles in my back responsible for keeping my right shoulder blade in place and it is “winging” around in front of my which is impinging some muscles in there and causing a good deal of pain.  Or it was, anyhow.  Physical therapy is definitely helping (Pilates, twice a week).  I thought Pilates was for flakes and models that don’t need to lose weight.   Not so.   It is a BRUTAL workout.

I’ve been spending a little time conversing with other patients online and learned that Dr. GT (now Idaho, formerly Utah, and before that a long-term colleague of BB’s in Arkansas) does have a clear point of view on reimmunization and it’s one that I can wrap my arms around because it’s quantitative.  When my CD3 and CD4 counts (both related to T cells, a good market of my immune system) have recovered to above 500, GT recommends reimmunization.  This is also the threshold for discontinuing use of Acyclovir (I don’t want to get Shingles again, I’ll tell you that much!) and that, too, makes sense and gives me something to track.  UAMS, of course, tracks these in all my bloodwork.  They are pretty suppressed right now — which is a function of long-term recovery from the transplants, but more likely Revlimid and, potentially, Velcade, both of which suppress white counts.

So that, at least, gives me a framework to operate in for both those topics.  Something to discuss with BB.

I was contacted again by a fellow UAMS patient a couple of years ahead of me on the timeline (six years now, no recurrence).  This person was kind enough to share his knowledge of the “extended maintenance” test going on right now.  Essentially, BB is randomizing another THREE YEARS of low dose Revlimid (5mg) versus dropping maintenance.  I’m curious about this, since BB told me years ago that he doesn’t randomize unless he’s certain there’s no difference in outcome (otherwise he would put everybody on the arm that he felt helped).  So I want to talk with him about his perspectives on that.  The original “cure curve” done for TT3 did go out six years.  That’s the point where everybody breathes easy.  As it happens the TT3 curve for people that achieved complete remission appears to bottom out at four years.  The difference here is, I think, attributable to patients that have a functional cure in an MGUS type state (very low residual M protein that is of “undetermined significant” and which is seen in about 3% of the population.   In other words, people that have residual M protein might take six years before they can be assured of being cured.

This raises an interesting point because it will be the first time in more than three years that I really have a decision point in terms of my therapy.  Do I really want to discontinue Velcade, even thought it’s becoming more and more difficult to tolerate, before those 4mm lesions are fully resolved with new bone?  Not really.  I’d like to stay on it until they’re completely gone if need be.  Do I really want to randomize myself into a protocol?  I don’t know…I think I’d rather look at the data and decide what I want to do.  Do I really want to entertain three more years of maintenance?  Maybe.   Jill and I spoke last night to make sure we don’t want any more kids…if I’m on Revlimid we’re not going to be doing that for potentially another 3.5 years by which time I think it would be a lot to expect of Jill and other family members.  These are the types of things to think about — and the types of things which older Myeloma patients don’t necessarily have to grapple with.

My plan right now is to ask Bart for a lot of data…I will dedicate a future post to what I’ll be looking for.  And I want the time to digest this and determine what, if anything, to do.   Meanwhile, 10 more Velcade infusions to go before the end of scheduled maintenance.  Hah…I sound like an online service that has planned downtime!  :)