Delaney Ozmun met me in Rochester on November 8 for my physical exam and full lab work-up on November 9, to be followed by the last daratumumab infusion #16, on November 12.  What a treat to have Delaney with me in really chilly Minnesota–snow and the whole works!  As it happens, I apparently do not own a “true” winter coat.  Kendall realized this while helping me pack for the trip, and she kindly supplemented my luggage with a warm knit hat, ski gloves, sock liners, and other cold weather gear that she had collected when she lived in Chicago.

Delaney and I met with Dr. Zand on November 9 to review my lab tests.  Dr. Zand works with Dr. Fervenza, and she is a co-investigator on the daratumumab study.  She’s been out for three months with her new baby, and her first week back to work coincided with my appointment.  Which was lucky, since Dr. Fervenza was called away to a family emergency in Brazil.

I wish I had good news to report.  Unfortunately, none of my lab numbers have gone the right direction.  Proteinuria, which is the chief measure of this disease at least so far as I know, has never been quite so high.  Other bad stuff–blood pressure issues and edema–all indicate progression of dense deposit disease.

We were not expecting this information, so Dr. Zand did some additional testing, and Delaney and I stayed in Rochester until November 13 to meet with her again.  And I actually completed daratumumab infusion #16 on November 12.  Unfortunately, the additional testing was still the pits, so the daratumumab trial gets a failing grade.  We are all still processing the information–the short version is that the daratumumab did not work and did not target what is actually causing this disease.  It targeted the MGUS, but for me, at least, the MGUS is not what causes my disease.  Sigh.  Also, the lab numbers show that things are moving in the wrong direction, so it is time for a new treatment route.  Thus, the end of the daratumumab road.  I  had an IV steriod infusion on Tuesday at Mayo while sitting in a heated massage chair, and it was quite the set-up!

This is not all bad news.  My kidneys continue to function, for which I am more grateful than I can possibly say.  I am back on immuno-suppressant therapy, plus a hefty dose of steroids (this is a new addition).  So if I am jumpy, anxious, and unpleasant, I now have the steroid excuse, and I will ask you to forgive me up front for bad behavior.  I will probably also become a germophobe and carry Clorox wipes everywhere I go.  I’ll keep you posted if anything interesting happens along the way.  Thanks for the love you keep sending my way–and I’m sending it back in spades.