I had a message from Beryl, Guillermo’s wife, this morning. Guillermo Berazadi passed away on Wednesday morning July 13th. His wife and two daughters were by his side.
Although I have known for several weeks that this was an inevitable conclusion, I am beside myself.
Guillermo’s first contact with me was ‘I like your blog and I like you’. It was mutual, as I fell in love with this man of insatiable curiosity, humor, and zest for life. Guillermo’s comments were little novellas, and as he shared his own remarkable story, Gil built a devoted following. When he was silent for too long, I would receive personal emails inquiring as to his well being. I would then harass him (he like playing hard to get sometimes) until he burst forth with some fresh brilliance.
I am glad Guillermo is no longer in pain, but I shall miss him so. My life has been made richer by his friendship. I take comfort from the wise words of Stephanie (a member of the Guillermo fan club):
“G – as always, believe there is solid ground beneath us or that we learn to fly as we take that next step.”
Rest in peace, my friend.
And now, my own update.
Slight further progression compared to my scan of two months ago, however, rather significant progression in general. In other words, slow but steady.
As Alice (Dr.Shaw) said; she would have preferred stability, (oh hell, let’s just go for remission), but at least it’s not galloping. And, we now have a menu of options.
As my performance level is still very good, Alice would like to keep me on crizotinib until we know that it will receive FDA approval (for which it is currently being fast-tracked) that way, should other treatments fail, I have the option of returning to crizotinib (as it would seem to yet confer a partial response).
Once approval is certain, I would get in queue for a trial of Novartis’ LDK 378, the first second generation ALK inhibitor. LDK 378 is administered in tablet form, is a very selective inhibitor and exhibits five times the potency of crizotinib. In addition, a model of my mutation in the lab (from the cell line started with material from my last biopsy) was sensitive to this particular ALK inhibitor. So, it is very promising.
Another experimental drug from Novartis, AUY922, an HSP-90 inhibitor, remains an option as well, but would involve weekly infusions and possibly broader side effects. Although not specific to ALK mutations, my secondary mutation model again showed sensitivity to this particular HSP-90 inhibitor in the lab.
So, on the one hand I am sad to be going down this path again, but I am also mindful of the fact that this time I have a compass, a map and Dr. Shaw by my side.
I will close today’s blog with some photos from an excursion I undertook last weekend with my friend Julia, to Strawberry Banke in Portsmouth NH. We had a wonderful time and I was much taken with one of the displays; an old home preserved in a marvelous state of decay. Just a reminder that there is beauty everywhere, every day, no matter what.