Tuesday, September 3, 2013

An unnerving update from Arkansas

I have been in Little Rock for about 16 hours, and already managed to get my pizza fix in from the always-delicious Dam Goode Pies.

Sadly, that is the highlight of the trip so far.

After early morning MRIs, the scheduling snafus began.  I am in the infusion center for my third attempt at getting labs done today.  I mention this primarily because I think back to nearly five years ago when I was running around City of Hope.  I have grown more tolerant of delays and scheduling mistakes -- I wonder how much is that I cut the good people of Arkansas slack given that they have hopefully saved my life, versus me just having mellowed.  Perhaps a bit of both.

I met with the data manager, a usually innocuous meeting that involves me updating the center here on anything of merit (for example the endoscopy, side effects, etc.) and signing some consent forms once in a while.  Velcade now has a small risk of some kind of horrible brain virus that kills ya dead. Very rare, I am told.  Nobody has seen it here in Arkansas, but it must exist.

That wasn't what troubled me, however.

I was told that the "lite arm" of Total Therapy 4 had been discontinued.  The lite arm involved one less cycle of induction (pre-transplant) chemo, and one less cycle of consolidation (post-transplant) chemo, and the transplant chemo spread out over more days versus the standard arm of the study.  The goal of doing the two arms was to see if they could achieve the same clinical efficacy (ie cure rates) and achieve less toxicity.

I was told the lite arm would not result in any less efficacy of outcome or it wouldn't be studied as it would be unethical to do so if the doctor had any reason to believe the outcomes wouldn't be as good.  So on we went and I was happy to get the lite arm as it meant less chemo.

In explaining why the study had been discontinued, the data manager said that it was because there was no difference in toxicity noted between the two arms, and the "gold standard" remained the standard arm so they didn't want to change it.  That is one interpretation.  The other is that the lite arm outcomes weren't as good.   Sadly, my money is on this as the real reason.

It is very disturbing, to say the least.

I see BB on Thursday and will ask him abut it then, if I don't see him before then for a drink or dinner.

I better not have gone through all this to have a worse outcome than if I had done just a little more.