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Me and my CAR-T- Part 1 on why I have moved to Seattle for 2 months
First things first.
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.
We are all in this together.