Day 1 of CD22 therapy - Monday, July 16, 2012

Blogging from the infusion room in the clinical trials suite at Dana Farber.  Today is Day 1 of the CD22 antibody trial.

Arrived late this morning is spite of allowing and extra hour to get here - smooth sailing all the way to the interstate exit just a mile or two from the hospital, then gridlock.

Everything for the study is done in the clinical trials suite, so there is no chasing around.  Started off with one IV to draw the labs.  Then an appointment with Dr. Steensma.  He said something about a snag with the pathologist this morning, but that it had been smoothed out.  Wonder what that was all about....  Had to await the final OK from the head of the trial (I think at another institution) before starting the protocol.  A series of 3 EKGs, 2 mnutes apart.  Then a second IV, premedication with tylenol and benadryl and solumedrol (steroid).  Then the chemo.  After the chemo another EKG series, and several lab draws out of the first IV (not the one they gave the chemo through) to follow blood levels of the drug and document its pharmacokinetics - how the drug acts in the body - in this case, following the levels in the blood as they change for the first few hours after the infusion.

Ryan's WBC this morning was 27,000 - up from 13,000 on Friday and 500 a week before that (normal is roughly 5,000 - 10,000).  So the leukemia growth is still raging.  Dr. Steensma said that it may be in part due to a natural "rebound' after being so low, but it's largely due to the leukemia.  He reassured us that in a week or two, we will most likely see that drop as the CD22 antibody starts to work.  I didn't see the platelets or H&H. 

It's pretty boring to sit here all day.  I had lots of e-mails to do in preparation for Youth Conference and a good book to read.  Ryan napped for a while after the benadryl, and is reading a book now.  We picked up an audio book from Cracker Barrel this morning to listen to in the car, but it was BOR-ING!!  We made it through 2 CDs and gave up.  Oh well, it only costs $3.50 a week to use Cracker Barrel's audio books.  I had to pay a deposit of $49 - the cost of the book.  It will be refunded, minus the $3.50, when I return it.  The only good thing about this particular book was that I didn't pay $49 to buy it!!

OK - 'nuf whining.

We were told we'd be here for 4 hours today, and it's turning into 8.  (Oops - sounds like more whining....)  Ryan and I will still be home in our own beds tonight, so we can't complain.  But poor Julie Andrew is stuck with my girls a lot longer than she had bargained for since Tim had to go to Watertown today.  I OWE you, Julie!!!!  You can go ahead and whine! 

In spite of the inconveniences, which in the big picture are minimal, I am excited to be here and to have this option.  This may be what saves Ryan's life.

Next up:  Road Warriors!!  The challenge is to see it I can ever pick the best lane outa Boston on our way home.  If you are ever driving near me, or in the grocery store, never go in the lane I choose.  It's guaranteed to slow to a snail's pace!
---Barb