Control, Not Cure: A New Path Opens Up Four Years Later - Transplant Then, BTK Inhibitor (Ibrutinib) Now

Four years ago today, I was admitted to City of Hope for a first remission hematopoeitic stem cell transplant. It was and still is the only possible path to a cure for CLL.

The only way to say: "I used to have cancer."

At that time not only was CLL incurable outside of a high risk transplant, there were no options that had even been shown to prolong life.

Now we have proven that FCR can add years to our life. The same is probably (but not certainly) true for BR and perhaps other very effective chemo-immunotherapy cocktails.

But FCR is hard on the marrow and not a great choice if you are older or more frail or have an auto-immune history such as ITP (as I do) or AIHA or if you are 17 p deleted or otherwise F refractory.

As those or you who have followed me from the get-go know, I failed my transplant because I rejected the graft. I was too healthy from an immunity perspective. With no graft aboard, I never had any of the desired graft versus tumor effect. Within a year I had relapsed and needed treatment again for my ITP and later my CLL.

The transplant didn't cure me, but it didn't kill me either. What it did do was buy me time until the game changing new therapies showed up.

Because of the brave souls who entered into phase 1 trials of an unproven and radically different  approach to CLL, I was able to follow their trail into a more mature and certain trial for a tyrosine kinase inhibitor, in my case ibrutinib (formerly PCI-32765) that blocks a pathway that is jammed in the on position inside my cancerous clone. It keeps telling my cells to proliferate and never die.

Not a cure, but a promise of longterm control with a very manageable downside.

There are other similar small molecules and pathway blockers and promising new antibodies and immune modulators out there that are changing the way we will approach CLL in particular and cancer in general.

Four years after I entered hospital on my high stakes gambit to be rid of this cancer once and for all, I am shifting gears. My transplant failed and since I never engrafted, it is almost as if it never happened. All my benefits (and risks) were from my one week of high dose FCR conditioning.

Today I am amazingly healthy after seven years of a battle with a persistent and aggressive enemy, but  now I have a kinder gentler approach and it seems to be working. Let repeat today's theme: Control if not cure.

I have made the shift. I was lucky to be able to see how the paradigm was changing and make a move. 

I can now clearly envision a new future that was just a distant speck on the horizon four years ago.

I can live with that.

G-d willing, for a long, long time.