Me and my CAR-T- Part 1 on why I have moved to Seattle for 2 months to treat my CLL
First things first.
Thank you.
I have been overwhelmed by
the support and prayers I have received in the past few days by email, comments
on the website, Facebook and messages. For years I have preached that we are
all in this together. Now I am living it. I cannot begin to express my
gratitude for your kindness and prayers.
Please forgive me if I don’t
get back to you personally. I read and savored every contact, some of them
multiple times, but it would sabotage my efforts at balancing my time at and
away from my MacBook if I tried to respond to them all
Know that you are
appreciated. Thank you from the depths of my soon to be cleansed bone marrow.
After prayers and well wishes,
the next most common emails are the one with questions.
And the most common questions
are where and why.
Let’s start to cover the where
question today.
It goes without saying that
CAR-T is a pioneering therapy. It is not yet commercially approved for any CLL
indication though it is being used to save the lives of children with acute
leukemia and adults with specific lymphomas. Approval in CLL is unlikely for any commercial
genetically engineered T-cell therapy before 2019.
Getting a commercial product
off label, even though they target the B-cell surface marker CD19 and would
likely work well in CLL, is a steep uphill climb due to their expense. The
relatively low numbers of patients and the short-term follow-up data in CLL CAR-T
trials makes the necessary arm twisting of the payers to cough up a half a
million for an experimental drug a task even Sisyphus that would reject.
So, I needed to find an open
clinical trial accepting patients like me with chronic lymphocytic leukemia.
I have no problem with the idea
of enrolling in a trial. On the contrary, we have pointed out countless time on
our website and in my blog that we cherish trials as the place to get the best
and latest care.
I am alive today because I
entered an early trial six years for the game changing small molecule,
PCI-32765, now known as ibrutinib. I am deeply grateful for the time and
quality of life that choice provided me.
I flew to snowy Columbus,
Ohio in the winter of 2012 from warm and sunny SoCal to stay alive and fight
again. It was the best move I could have made.
And I am planning to repeat a
similar process now.
Today there are few choices
for CLL patients wanting CAR-T therapy, though the number of options is
growing. All take place at large cancer centers, all with experience in the
other “old school” cellular therapy, namely hematopoietic stem cell (bone
marrow) transplants or HSCT.
So why did I choose the
Seattle Cancer Care Alliance (SCCA)/Hutch?
First, one can’t enter a
trial that isn’t open.
Since these living drugs are
all bespoke and as I said before expensive and labor intensive to manufacture,
the trials tend to be small and they open and close quickly. For example, U.
Penn, a true pioneer in CAR-T treatment for chronic lymphocytic leukemia, has
no openings at this moment.
If you’ve heard me speak on
self-advocacy, I teach that we have time, but we don’t have forever. Windows
open and shut and one sometimes has jump through quickly.
And there is cost to doing
nothing and waiting too long. This is especially true in CAR-T, where there is
an early suggestion in the data, similar to the case with HSCT, that efficacy
is improved with lower tumor burden, especially with the lack of bulky nodes.
Equally important, there is increasingly good evidence that the risk and
severity of the adverse events, specifically cytokine release syndrome and
neurotoxicity, are related to disease burden.
Waiting for a trial to open
when the CLL growing is not always a good option.
More on my Seattle choice
later. I suddenly need to rest.
Stay strong.
We are all in this together.
Brian
http://cllsociety.org
http://bkoffman.blogspot.com
If
the CLL Society has helped you or a loved one, please consider making
a donation
posted by Brian Koffman at
9:42 PM
3 Comments
