Day 8 of CD22 antibody - Monday, July 23

Not much to post over the past week.  Ryan got his first dose of the CD22 antibody therapy 7 days ago.  It was a long, dragged out day - probably typical of any "first".  Especially given the hurry with which they got him on the protocol. 

Since the first dose, he has struggled daily with severe nausea and occasional light-headedness.  No vomiting, but no appetite either.  It has been a really tough week for him.  He lost 6 pounds.

No news yet on the siblings HLA testing.

All week, I've been praying that this would work, that his nausea was a sign of progress (no rational explanation for that thought - proof we grab at straws....), that his results today would show a response, that I'd be able to deal with whatever they would be.  I've been approaching today's trip with a schizoid mixture of hopeful anticipation and dread.

Today we drove to Boston, got his labs drawn, and waited.  And waited.  In the waiting room he saw his friend Bob from when they were both patients at Albany Med.  Bob has a rare and aggressive form of leukemia.  He got his transplant at DFCI about a month ago and is home and doing well.  That was encouraging.

Then the big moment - the appointment with the physician assistant.  She came in with a huge smile on her face.  His response was fantastic!!  Of course, she reminded us, this doesn't mean we have any guarantees.  But the grin on her face said a lot!

His WBC was 1900 - down from 27,800 last week.  And zero "blasts" - the immature forms of the lymphocytes.  Platelets and red blood measurements are all good.  And, best of all - the neutrophils outnumber the lymphocytes 3:1 - closer to the normal ratio.  That's the first time we've seen that since his diagnosis.  Finally something is preferentially knocking out the lymphocytes while the marrow is still producing the healthy WBCs.  And all the other labs - liver, etc - were absolutely normal. 

I wanted to jump up and down and shout!!!  Ryan was pleased as well, but his response was subdued due to his nausea.

Then off to get his second dose of CD22 antibody.

The results don't make the nausea any better, and I suspect getting the second dose today means we'll see more misery this week - but at least he now has reason to hope that he's not going through all the misery for nothing. 

I get goose bumps just thinking about it - what a miracle!!!!
---Barb