Friday, December 7, 2012

Been a slow news day for a month or so...

Howdy folks.  I hope you and yours are off to an enjoyable start to the holidays.

Not that much to report, but a few things I should note for those playing the home game:

* I've been off Revlimid and Dex for almost 90 days now.  Tiredness is improving.  Mental acuity (which is one part related to tiredness or lack thereof, and one part independent of it) seems to be improving somewhat.  Face is not quite back to normal but probably 70% of the dex bloating is gone.  Heartburn gone.  What little neuropathy I had from time to time is gone.  Leg cramps gone.  Hurray!

* The Velcade dose, upped to 1.5mg/m2, is tougher to tolerate now than ever, in part because of the increased dosage, in part because the body is getting worn down from dealing with this weekly for almost four years now, and in part because the Dex used to mute the effects of the Velcade.  Sorry for the TMI squad here but in the interest of science I must report: the diarrhea remains unabated, although the frequency has dropped from 15X a day (yes, it really was this bad) to maybe half that.  The GI pain is more pronounced and intermittently affects me all week long, now -- I might have one or two pain free days before the next injection.  I use Vicodin to cut the pain; occasionally it is intense enough that I need to take two of them.  Not great, but I'm not taking more than six or seven pills in the course of a week so I don't think I'll develop a habit.  Nonetheless, I'm looking forward to not needing it!

* After being pretty healthy for a year (other than the hand/foot/mouth disease, that is!) I have had the stomach flu and now the regular flu in the last two weeks.  My white counts are no longer as suppressed as they were while on Revlimid, but we Brethren of the Weakened Immune System must remain ever-vigilant with our use of Purell lest we come down with something.  Tamiflu and Levaquin are holding the flu at bay but it's never pleasant.

* I recently had my blood tested for childhood innoculation antibodies, which SF at City of Hope had told me sometimes the body "remembers" after transplant.  Well, the body don't remember this stuff after two least not in my case.   I have ZERO immunities...except to Chicken Pox since I had Shingles a couple of years ago.  I wonder if the presence of antibodies to Shingles means I can stop taking Acyclovir?  Something to consider...although I really don't want to do that until the killer cell (CD4?) count is back in normal range.  I do NOT want Shingles again.

Meanwhile, steady as she goes until my next visit to Arkansas in March.  I will nonetheless keep you posted in the interim!  As advance notice, BB will be on a Curetalk panel in February which I'm very much looking forward to joining.  And I'm sure there will be the occasional bit of news along the way.

Be well, all!