Category Archives: Media

Kumo and I pay a brief visit to the Ivy League

Or rather, they paid us a visit, as I had the privilege of being interviewed for a story in the May/June issue of Harvard Magazine. The news just came through that I am a cover girl as well.

The article, Targeting Cancer, features Harvard researchers, including my personal goddess/oncologist, Dr. Alice Shaw.

Jonathan Shaw, the managing editor of Harvard Magazine, has written a marvelously comprehensive overview as to where the treatment of cancer is currently but also the directions in which it is heading. Says one researcher about acquired resistance: “We’re not going to get there in one fell swoop…We’ll get there by keeping people alive longer and longer, until eventually, it becomes a numbers game where the goal is to eradicate all the tumor cells and leave none behind that have drug resistance mechanisms that allow them to escape.”

It is the sort of heady stuff that inspires hope, and a potent reminder that some truly great minds are in this battle with us. And, that in this numbers game, each day is a little victory.

FDA approval for crizotinib and a new name: Xalkori

On Friday, August 26th; crizotinib received FDA approval. It is now called Xalkori. Nice little features on both the ABC  (scroll down to find Xalkori) and NBC evening news a couple of nights ago. That’s my oncologist/goddess Dr. Alice Shaw providing commentary, and in the NBC piece, the images of the before and after chest CT scans are my lungs (an online friend recognized them and emailed me!). They do get around (my lungs and Alice).

I should also mention that there was a story about Pfizer’s coup in the Wall Street Journal on Tuesday with a picture of and a few quotes from yours truly. My Dad Ollie, who read the WSJ faithfully, would have been pleased to see me there.

I’ve noticed some criticism on the blogsphere, as Xalkori comes with a hefty monthly price tag ($9600), but Pfizer has taken steps to provide financial aid for those who need it. Also called out has been the fact that only 4-6% (or according to this latest data, almost 10%) of people with NSCLC have a mutation of the ALK gene. However, there are so many cases of lung cancer world wide (according to WHO, 1.4 million deaths yearly from lung cancer), that when you do the math, it is a truly significant number of patients who shall potentially benefit.

So yes, Xalcori is big news for Pfizer as well as those of us with lung cancer and the FDA is to be applauded for streamlining the often ponderous approval process.

And now, on a more personal level; what’s up with me.

On August 19th I took my final dose of crizotinib (Xalkori). I am now ‘washing out’ in preparation for my next party trick (make that a miracle). Yesterday I peed in a cup, had bloodwork, a physical, an EKG, a chest and abdominal CT (with contrast–blech) and a PET scan as well. I was given one of those nifty cards identifying me as residually radioactive for 24 hours (just in case I encountered someone with a geiger counter).

I am scheduled for my lead in dose of LDK378 next Wednesday and that’s when the circus really starts.

In the meantime, I am feeling pretty crappy. I saw Alice (Dr. Shaw) yesterday, and she thinks that quite probably, the crizotinib was still conferring some protection, which is good news if in the future we want to add it to my arsenal again. Now that I’m off treatment, my energy level has really dipped and my shortness of breath is catching up to me. Today I made myself go on a walk, as I’ve been breaking my own rules lately (never stop moving). It was also Peter’s first day at the Academy, and he’s going to require a lot of support as he adjusts to a very rigorous academic schedule, so I’ve got to stay on my toes.

What can I say? It is a stressful time for all of us, but we are doing our best to stay positive and hopeful. Because that’s how it’s got to be.

News Flash

The episode of Dr. Oz for which Diane, Eileen and I were interviewed will air tomorrow. Click here for a link to your local times. Don’t take any restroom breaks, or you might miss it.

Update:  I was at the orthodontist with Pete when it aired, but you can see the show on the Dr. Oz website now as well. Just so you know, they asked us all to look sad and serious at one point (contemplative). Happens to me sometimes, but I usually try to avoid it, particularly when being filmed, as it is not my most flattering facial expression.

But enough about me! Diane and Eileen, you were great. Still think I could’ve squeezed in there, (oops, me again) but you betrayed no semblance of stage fright and both looked lovely. It was more than swell of you to make the effort to travel back and forth to NYC for the taping (on a messy winter day), and for showing the viewers an unexpected face of lung cancer.

And a belated thank you to Dr. Oz as well. It’s great to have media paying long due attention to lung cancer, and to help dispel the myth that only smokers are at risk for the cancer with the highest mortality rate.

One more update: Eileen was interviewed on the local Fox 25 news yesterday, and was able to tell much more about her story–which is amazing. Click here to view that segment.

Land of Oz: part two

And then it all got kind of weird. There had been talk of Diane and I going to New York on Tuesday to be part of the audience for the live taping of the Dr. Oz Show. By Sunday night we hadn’t heard whether tickets were available, so Diane and I decided it wasn’t going to happen. There was no school on Monday in honor of Martin Luther King Day, and I took Pete and a friend of his to lunch and a film. Around 1:30 p.m., messages were left on my cell phone and our land line by a producer (not the same one I interviewed with). I didn’t listen to these messages until a little after 5 p.m.  What I heard was that the tapes were great, and they really wanted all three of us to be part of the live show. I called back, and was told, ‘oh hi Linnea, sorry, due to time constraints, we couldn’t reserve a place for you’. Um, okay, I responded, feeling a bit stunned.

I then called Diane, who had also left a message, and who relayed that both she and the other interviewee, Eileen, would be traveling to New York on the network’s dime and would be scripted into the show.

Talk about odd (wo)man out. Nonetheless, I said to Diane, well, that’s alright. However, her response was, ‘no, it’s not’ and I said, yeah you’re right. It’s kinda rude, and what about solidarity?

So I left a message on producer number two’s voice mail, expressing my misgivings about the propriety of this situation. I followed up with an email to producer number one, whom I’d felt such a connection with. As I described in brief what had transpired, I summed up my current emotional status in rather plain language; I said I felt hosed.

In the meantime, Diane (had my back, she did) called producer number two to say ‘hey, what’s up?’ That producer called me back, with all sorts of excuses, (time, budget, etc…) as well as the explanation that the first two out of the three of us to have called back were going to be on the show. But then why, I said, did you say in your message that you wanted all three of us? So, so sorry. Nothing personal. And that, in fact, the budget allowed for me to attend the show, but I would only be part of the audience. My response? No thanks, that would actually feel even worse than not going.

So then the first producer emails me back, very upset. This has all gone down without her knowledge. She is so sorry, and could she call me. I give her my number. She emails back that she’s been called into her boss’s office.

Some time later, she rings. Again, she apologizes (and I believe her, I feel she is truly a caring person). However, after talking with her boss, the bottom line is, there is no more room on the stage. Two experts, two guests (the other women), and Dr. Oz. Five max. But, I can come, and sit in the front row, and they might ask me one question.

I really like her. I do. We could be friends. So I tell her the truth: that I spent enough (humiliating) time in high school warming benches (I was the girl who tried out for everything but who also really sucked–probably key to my evolving tenacity), and that this felt like a consolation prize, and thanks for trying, but no thanks. And then I explained, that this wasn’t about personal glory. If I was going to be famous, I sure didn’t want it to be because I had lung cancer. That I agreed to do these media gigs in the first place, because I thought it was important, and the right thing to do. And that I was never compensated for my appearances (in fact, in order to make them happen, would rearrange my own schedule, often travel long distances, spend hours of my own (precious) time and even personal funds), but that the one thing I required in return was respect. And that had just been denied, this all felt really shitty, and I really wished the silly invitation to attend the show had never been extended in the first place.

It wasn’t her fault, (producer number one) and I continue to really like and respect her. And, without a doubt, the show went on without me.

Once, many moons ago, I  followed a boyfriend to New Haven, where he was in school. I supported myself as a clerk at Dress Barn and posing as a figure model in the art school at Yale. I also lived in an old victorian with six other people, all students. My room was in the attic, in what was once the servants’ quarters, and across the hall was a brilliant young man working toward his PHD in physics. We became good pals, and one day he invited me to share his dinner. I sat and chatted with him as he stirred olive oil and garlic into spaghetti, and then watched, amazed, as he dished the pasta onto only one plate and then began to eat it.

“But Jonathon”, I said, “you invited me to join you”. “Yes”, he responded,” but it turns out there is only enough for one”.

That is what my experience with the Dr. Oz show ultimately felt like. I had been invited for dinner, but upon arriving, had been told there was no room at the table for me, and that perhaps I would like to take a seat in the pantry.

I’m certain Diane and Eileen performed admirably on Tuesday, and hopefully the show will bring more attention to lung cancer. I hope it will ultimately be something I can feel good about. For the moment, it has left a bad taste in my mouth.

The moral of the story; if you agree to participate in any sort of media project, realize that, just as the second producer said to me, it’s not personal.

im·per·sonal (im pʉrsə nəl)


  1. not personal; specif.,
    1. without connection or reference to any particular person: an impersonal comment
    2. not existing as a person: an impersonal force
  2. not showing human feelings, esp. sympathy or warmth: don’t be so cold andimpersonal

What’s been happening in my little world…

First of all, snow. Snow, and more snow.

And it hasn’t been just the white stuff that’s been whirling around:  I’ve been on a bit of a spin cycle myself. On Friday a one man film crew was here for several hours to work on a possible project. I had the starring role; Buddy was the supporting actor. Mostly I talked, but I did a little fake painting and some snowshoeing as well. That’s where Buddy was the scene stealer; at one point even barreling into the poor camera man (because that’s what you do to make friends when you’re a dog).

Not sure what will come of it all, but it was a fun afternoon; the young man, Keith, is also a documentary filmmaker, and has a film out now called Boys Of Summer.

On Saturday morning I got up and made a pot of spaghetti, as Pete would be flying solo that day (well, with Buddy as his wingman). And then I headed out the door to Boston, where I was to be interviewed and filmed once more; this time for a segment on the Dr. Oz show about young, non-smoking women with lung cancer. I was happy to still make the age cut off.

I was also feeling pretty together and organized, arriving 45 minutes early, at least until I discovered that my mapquest directions were absolutely useless. Anyone who has ever driven in Boston knows that it can be very unforgiving when you don’t know where you are going. Poor or non-existent signage, lots and lots of one way streets (which present few opportunities to correct mistakes), and an almost total lack of a grid system.

I overshot the first phantom exit by several miles, and pulled off Storrow Drive and onto a side street with a Dunkin Donuts. Although no one behind the counter could help me, I knew that before long one of the patrons would prove useful. In fact, two burly gentleman drew me a detailed map on a napkin, only to ask what town I was trying to get to. “Oh no, that’s the other direction”, and then they made all sorts of suggestion which had nothing to do with my original map. So, I backtracked. And missed the phantom exit again. I left a message with the producer, telling her that I was going to be late, and then executed an illegal u-turn at a light. I merged off of Storrow as if I was going to MGH (at least I knew where that was). On Charles Street I parked (illegally) in front of a hydrant and ran into a florist (when I was in Stockholm, I learned that as a trick of their trade, florists know where everything is). The florist’s advice got me on the right track, but now all of my mapquest directions were in reverse, and I was being directed to turn down one way streets going the wrong direction.

I knew I was somewhere in the general vicinity of my destination, so I left my car in the first available parking garage. Now quite late, and flustered, I also left my gloves and my cell phone. Luckily, although the temperature was in the teens, the sun was shining and the streets were not wind tunnels. Again I relied on the goodness of the people of Boston to guide me. One young lady even walked two blocks with me.

I had also chosen the wrong footwear for a trek along the icy brick sidewalks. After precariously making my way to the correct address, I rang the bell only to discover it was the wrong street. I was still two blocks away. At this point, I really just wanted to lay down on the nearest snowbank and have myself a good cry.

When I finally got to the proper location, I was almost an hour late. And of course, they had been calling my cell phone, which was in my car. Oh me.

My friend Diane, who coincidently was also interviewed, answered the door. And then the cameraman and his son, both of whom I’ve worked with before, gave me a hug (the son, Cory, is a blossoming filmmaker as well; click here to go to his website). More introductions were made, a quick lunch was served, I caught my breath, and we were ready to roll.

It turned out to be a great experience. The producer asking the questions obviously cared a lot about the subject matter, having been touched personally by lung cancer on several fronts. The entire crew was wonderful. And when my segment concluded, the husband of the last woman to be interviewed gallantly walked me back to the garage (which turned out to be about eight blocks away).

But that’s not the end of the story. Tomorrow, part two.