9/24/13 – I had my 3rd set of
scans yesterday (I get scanned after every 3 cycles or every 63 days) and I met
with Dr. Mateo today to get my results. As with the last time I met with Dr.
Mateo, he started with a comment that brought a big smile to the faces of my
wife and me. “You are the star of Ibrutinib.”
My Mantle Cell Lymphoma is now considered reduced by 100% . I just cannot put into words how
thrilled I am.
So,
what’s next? Well the stem cell/bone marrow transplant is looking more and more
like a reality and, my guess is, it will be sooner versus later. With my MCL
reduced to nothing, it is the perfect time to begin the transplant process.
BUT, there is still a major obstacle to pass. I must be a little too unique
because so far we have still not found a full match. In order to move things
forward the transplant team is now looking in another direction to find me a
donor. It is called a “Tier Preferred Half Match.”
I do have two daughters who are certainly half of me. In addition, one of my
brothers is a little better than a half match. We will be testing all three who
is the best of the Tier Preferred. I am not an expert on this but my
understanding is that we will select the person who has different “T” receptors
on the natural killer cells. We should know who my best donor option is within
the next 2 to 3 weeks.
I
often get asked the question: “if the study drug is working so well why you
still need a transplant?” This is an excellent question and believe me I have
asked my doctors it many times. It all comes down to the fact that no one is
sure how long the Ibrutinib will work. If this was 5 years from now I
would possibly do things differently… but it’s not. I have to make the decision
based on what we know. I am a young 52 year old and I certainly have many
things I still want to do. I will go with whatever gives me the best chance of
a long life.
To
change gears… This Sunday, September 29th is the 5th
Annual Celebrate Life and Liberty event at Liberty State Park. This is an event
that is sponsored by the John Theurer Cancer Center at Hackensack University
Medical Center and of course Dr. Goy will be up front with, cancer coach,
Sharon Parker MC-ing the event. The special performing guests will be Gloria (I
Will Survive) Gaynor, and the Village People. In addition, my daughter Alli and
I will be up on the stage performing a song as we did at last year’s event. It is
sure to be a blast. I can’t wait to tell you all about it.
“A Psalm for giving thanks. Make a joyful noise to
the Lord, all the earth! Serve the Lord with gladness! Come into
his presence with singing! Know that the Lord, he is God! It is he who
made us, and we are his; we are his people, and the sheep of his pasture. Enter
his gates with thanksgiving, and his courts with praise! Give thanks to him;
bless his name! For the Lord is good; his steadfast love endures
forever, and his faithfulness to all generations.”
Psalm 100:1-5
More
to come…
http://mantlecell.blogspot.com/
