Back in May during my two-year check up, we discovered that
my leukemia had returned as “minimal residual disease” or MRD as the powers
that be refer to it. Throughout
the next months, they continued to test and check to determine any growth
pattern. While it has grown, it
has still stayed at the “minimal” level.
While that is good, it has not made my doctors feel that much better
about my being out of remission.
The reason is that they cannot predict how long it will remain
“minimal.” It could be a few
months, a few years, or a few days.
And my stem cell doctor did not work so hard to save me just to let
something slip in and mess things up!
:)
So besides other matters such as unexplainable rashes, a throat
biopsy that came back with a mixed message, and a parathyroid that still needs
to come out, Dr. Shah has been looking at two possible options, actually
three. 1) A DLI, donor lymphocyte
infusion, which is where they use my donor’s lymphocytes for a mini transplant
booster. The problem with the DLI
is that there is a high risk of GVHD (graft versus host disease). 2) CAR (chimeric antigen receptor)
T-Cell Gene Therapy, a clinical trial where they use my cells or donor cells
(they will use mine in my case) to extract T-cells and engineer them to attack
B-cell cancers that have a protein called CD 19. Or 3) Wait and do nothing until I am more symptomatic. There are new leukemia drugs that were
not available in 2011-12.
The problem with option #2 was that I had not qualified for
the trial, so we have been in wait mode…until late November when the
specifications were changed and Dr. Shah shoved me in while the door was
open! The reason she opted for #2
instead of #3 is that while it is a relatively new therapy, it is not far from
what has already been done to me, so the side effects aren’t much different
than what I have already dealt with.
In fact, they should be much less (best case scenario). “Lowered immune system, hives, rash,
low blood pressure, muscle pain, joint pain”…whatever. However, since my cells are mostly
donor cells, there is still a significant chance of GVHD, even though I am
getting “my own” cells. The
greatest, but least likely, risk is that my old cells that get mixed in with
the assassin group start attacking my graft. If that happens, we would have to go all the way back to
square one with another stem cell transplant. :/
But the possible benefits far outweigh the risks! Her thoughts are that if this can get
me back into remission while I am still “young and healthy” (I love when she
says that) that we’ll still have #1 (DLI) and #3 (new drugs) in our back pocket
for the any future bouts. The more
chemo you use early on, the less effective it is later…the fewer options are
available. I’m still young. I need to have as many options later on
when I really am “old.”
So, today, December 29, I signed my consents; then they
proceeded to take 21 vials of blood to use for gathering the T-cells. (Almost as much as in a can of
Coke.) The first 18½ flowed out
fairly well, but then I must have just run dry! :) They worked with my veins and re-stuck
me, which made #3 for that arm for the day (labs and two draws). Nothing. They were about to just make do with what they had, but I
insisted that we weren’t stopping until they had all 21! If we were going to do this thing, we
were going to do it right! So they
warmed up the other arm, finally found a vein, and got the last few vials. Done!
Over the next 50 days, they will genetically modify the
T-cells and turn them into little assassins. Seven to eight weeks from now, I will receive my T-cell
infusion, along with meds to help avert allergic reactions. In between now and then, I will have to
get another CVC inserted for the receiving of the cells, just like I had for my
stem cell. Somewhere in here, they
are probably going to remove my parathyroid…before the cells go back in and the
immune system goes down. Afterwards,
I will start the routine follow up schedule similar to post transplant…. This is a 15-year trial! Praying that I make all 15 years!! :)
I decided to wear my special #BTHOCANCER t-shirt that we
have in support of our friend Russell Lambert who is currently fighting a
stubborn ALL. Today I am wearing
it for us both.
Please pray with us that this therapy produces the desired
effect of remission.
“May
the God of hope fill you with all joy and peace as you trust in Him,
so
that you may overflow with hope by the power of the Holy Spirit.”
Romans
15:13
