Out of the Frying Pan, Into the Fire

Being on 50 mg Sprycel was nice.  Nice to not have to watch the bruises bloom on my arms with the slightest bump, and nice to be able to go more than a couple of weeks without a blood transfusion.  Alas, it was not meant to be.  While my blood counts initially recovered on a lowered dosage of Sprycel, they eventually began to fall again, and my PCR - the test that measures the percentage of leukemia cells present in my blood- tripled in a matter of six weeks.  

So here I am again, back on a full 100 mg dosage of Sprycel, with blood counts falling faster than ever.  I've had a total of five blood transfusions so far this year, and am fully expecting to be needing another in the immediate future.  But, now, even that is complicated.  I had an allergic reaction to the a transfusion I had in September - 5 days worth of fever, chills, and diarrhea - so I now need a mega dose of iv benadryl to make it through.  The last transfusion (October) went off without a hitch, although I had to fight hard to stay awake.  For those that have never had iv benadryl, as soon as they administered it I felt immediately drugged.  My tongue felt too big for my mouth, my eyes wouldn't keep up with my brain, and I had to consciously try to figure out if I was breathing.  (I was.) 

I'm not sure what exactly went wrong, but, apparently the more transfusions that you have, the more chance there is that you can develop antibodies post transfusion that recognize the donor blood as foreign, resulting in the immune system attacking the donor red blood cells.  I think that this is what happened, as two weeks post transfusion, my blood counts were at pre-transfusion levels (hemoglobin was low at 6.9) and I required yet another red blood cell transfusion.  (I usually get four to six weeks between transfusions.)  There has to be a better way, right?  Apparently not.

My doctor has decided that I need to see a Specialist as I am not a "typical, easy case" and in his words, he'd much rather have "someone holding his hand" regarding my treatment.  I'm all for it.  Waiting for my records to be sent over for a specialist appointment at Loma Linda.  Waiting, and waiting.  I do an awful lot of waiting.

And so, I'm back in the same predicament - the same f'd up cycle - except it seems to have become a bit more accelerated, with blood counts at record low levels, and staying there, and PCR still well above 1% after over 18 months of treatment.  In case I haven't mentioned it, having cancer sucks.