Tag Archives: Zykadia

The downstream effect of two miracles of science

Posted on October 12, 2016 | 10 comments

My friend Dr. Tom Marsilje wears a number of hats–devoted parent, dedicated scientist, cancer patient and absolutely amazing advocate/activist.

Tom holds a special place in my heart and personal history but sometimes I have to stop and remind him; we both suffer from chemo brain, a subject he recently covered in his column for the The Philadelphia Inquirer.

He was in town briefly last week so we met for lunch and a photo op in front of Miracle of Science in Cambridge. I mean, how could we not.

Linnea and Tom: two miracles of science

Linnea and Tom: two miracles of science

After snapping our selfie we headed down Mass Ave to Flour, one of my favorite little cafes. Lunch banter was about any number of things including Tom’s relatively new role as a writer, and he noted that it makes him feel good to be really making a difference. I just looked at him incredulously before exclaiming “Dude!”

At this point I should remind you that Tom codeveloped LDK-378, the second ALK inhibitor I was on trial for. Also known as ceritinib and now marketed as Zykadia.

I then used my finger to draw an imaginary line on the table. “This” I said, “is my lifeline. And this is where I started taking ceritinib. No ceritinib and my lifeline stops right there.” And then, for further emphasis: “I am alive because of you and don’t think I ever forget that, even for a moment.”

By this point I was getting a little weepy. I went on to say that if Tom were a war hero rather than a scientist who developed a lifesaving drug for a pharmaceutical company, than his role would not be so seemingly anonymous and that he would be celebrated. But that the lack of accolades in no way diminished what he had already accomplished, which was to extend the lives of so very many ALK positive cancer patients. Including yours truly. And that I was grateful to the moon and back.

Such a tight connection between the individuals who come up with these drugs and those of us who take them. A lot of cause and effect going on there and to think that Tom and I would have the opportunity to also develop a human connection is just way, way cool. This guy had my back long before he ever met me (but must of known of my existence as an ALK+ individual). Gotta say I’ve got his back now but sometimes that just feels like hanging onto contrails as he’s jetting around with astounding energy and putting his fine intellect and experience to work as an advocate/activist for patients with advanced cancers. I feel both honored and blessed (and damn fortunate) to have him in my life.

Which leads me to this closing thought: maybe we should nave a national hug a medical researcher day. Followed by a bunch of bang up fundraising.

xo

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Posted in Advocacy, ALK mutations, LDK 378

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Where the heart and science intersect

Posted on September 26, 2016 | 5 comments

Way back in 2008, when I enrolled in a clinical trial for crizotinib (Xalkori), it was the only ALK inhibitor in the world. That meant that once it stopped working (and my oncologist stressed from the get-go that this was not a cure, but rather a respite from cancer) it was the end of the road.

One year in I began to develop resistance to crizotinib but without further options, I stayed on trial and eked out almost two more years. Then, just in the nick of time, a phase I trial opened for a second ALK inhibitor–ceritinib (Zykadia).

Of course, in my universe the individuals who develop the therapies that have extended my life are absolute superstars and I the ultimate groupie. I was given the opportunity to meet Dr. Jean Cui, who formulated crizotinib, at the Xalkori Launch in 2011 and I became her number one fangirl.

I couldn’t tell you the exact moment in which Dr. Tom Marsilje and I entered the same orbit (and nor could he, as we both have chemo brain), but he codeveloped ceritinib (Zykadia). By the time I was introduced to Tom, he was battling his own cancer and suddenly our connection became a whole lot more personal.

My friend Tom is an absolute rockstar in every sense of the word and you’d be remiss not to read this profile of him in STAT–Cancer researcher races to find a cure–for his own incurable cancer. This article hits all the high points so I’ll just provide a few more personal details.

About six weeks ago Tom was in Boston and we got together for dinner (along with our mutual friend, John Novack, of INSPIRE) at the appropriately named Miracle of Science. Obviously we should have taken a selfie but neither of us thought of it (blame it on the chemo brain). We’ll just have to do a redux at a later date.

However, the first time Tom and I met in the flesh (like so many of my friendships, ours existed in the email/social media sphere), it was entirely by accident. We were both in DC this past spring, lobbying for our individual cancers (lung and colon). I was waiting for an elevator in the basement of the Russell Senate Building and noticed a man standing with his back to me and thought ‘he sort of looks like Tom Marsilje’. Well, that man turned around, saw me, started to shake a little (we were both gobsmacked), and then I rushed over to give him a big ol hug. The serendipity of our encounter was just sort of perfect.

Anyway, count me a huge fan. Even if he if wasn’t one of the reasons I’m still here, I’d be impressed by and with Dr. Tom Marsilje.

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Posted in ALK mutations

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