Category Archives: Xalkori

The pass it on power of media

Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.

Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.

I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.

Linnea and Bill. Connected 🙂

 

Downs and ups

I’m going to begin with another blanket apology. Not only have I been a poor communicator when it comes to blogging, I’ve also not been very consistent about returning personal emails, texts and phone messages. Somehow I lost my date book (in a snow drift somewhere, I betcha) and chances are excellent that if I’ve not done so already, I will miss some appointments.

This galls me because I don’t like being a no-show. In a world rife with promises and proposals, showing up is the only real currency, and I’m afraid I’ve fallen behind in my accounts.

There. Now I’ve at least acknowledged my shortcomings and offered an apology (perhaps preemptively in the case of upcoming appointments).

On the home front, I’ve been back in my apartment for a week and a half now. Servpro did a wonderful job and once again my landlords are to be commended for their quick attention to the mold situation. My eyes are no longer red each morning and my rash has disappeared as well. The only thing that has lingered is my cough, and that, unfortunately, is due to the progression of my cancer.

Yes, when progress is anything but. I saw Alice last week to review my latest scans. Compared to the previous CT scan (six weeks earlier) my cancer is picking up its pace. The largest area of tumor in my upper left lobe increased in size  from 4.0 cm x 1.9 cm to 4.2 cm x 2.5 cm. Noted on the radiology report (and quite obvious when viewing the earlier scan side by the side with the most recent one) is increased prominence of the ground glass opacity. And of course there are numerous little nodules in my right upper lobe as well.

The plan is to start back on Xalkori (crizotinib) asap. First, however, my insurance company has to approve the prescription. To that end I’ve received an automated phone call making certain I was me (social security number? mother’s maiden name?) but no other word and certainly no drug showing up in my mailbox. In the meantime, I’m continuing to enjoy grapefruit, which will soon be verboten.

How am I feeling? Overwhelmed. Sad and occasionally very frustrated. Tired and weaker; both of which I attribute to the progression of my cancer. Sore—I’ve screwed up my back something wicked. I was carrying my easel across the parking lot and slipped on some black ice and fell down hard. Unfortunately I think it was the last straw for my back. So, now I’m sporting a brace, sucking down advil and just hoping that time (and, finally, some respect!) will heal.

Of course, in addition to the trials and tribulations there is the wonder and not some small sense of pride at this fresh chapter. I’ve made fantastic new friends and gone to parties, potlucks and art openings galore. In a further sign of my commitment to the future (rsvp-ing, if you will), I have rented some additional studio space at the mill next door. It is where I shall paint but also set up shop—soon I hope to be offering for sale not only my photos and paintings, but a slew of vintage clothing.

Yes, in those months when I was getting chemo I was busy. Shopping. Hanging out at thrift stores and buying up a rather impressive array of clothes, shoes, hats, scarves, bags, ties and jewelry. In April the doors will open to The House of Redemption: Second Chance Clothing.

So you see, as I said to Alice, I’ve got plans. Big plans. And although cancer may mess with them a little, it’ll just be a temporary setback. All this stuff I’m hoping to do is a form of positive visualization; my rich fantasy life put to therapeutic use. And I am certain it can be realized. To wit: after my appointment with Alice last week I placed a phone call to a woman who was selling some inexpensive teak storage units on Craig’s List. I liked the sound of her voice and as I drove to her house I fantasized that she would be really great, we’d become fast friends, and she would invite me for dinner.

Well, when she opened her front door I was enveloped by the smell of curry. We began to chat about this and that. I agreed to purchase the shelving and went out to my car to get it ready for loading. When I came back inside, this very nice woman said that she had just spoken to her husband on the phone and if I waited twenty minutes, he would be able to assist me. And then she asked me if I would like to stay for dinner.

I laughed and told her that I was almost embarrassed as I had in fact imagined this particular scenario. I suppose some people might have been alarmed at this point, but as it turned out, we were two peas in a pod. Her husband came home, we (well, mostly he) loaded my purchases, and then the three of us sat down for a delicious meal. It was a magical experience and, I am certain, quite out of the ordinary for a Craig’s List transaction.

Moral of the story—go ahead and hope. You never know where your imagination may lead you.

Xalkori Launch

We take the stage

Alright Miss Duff. Enough procrastination. Time to write about the Xalkori launch.

From the evening of October 25th through Thursday morning on the 27th, David and I were guests of Pfizer at the Copley Square Marriott in Boston. We were in attendance for the patient portion of the Xalkori launch.

After registering on Tuesday, I located the ballroom where Alice (Dr. Shaw) was scheduled to speak. An interactive display had been installed in the foyer with patient photos and videos, and as I was checking those out I ran into the speaker herself. There was time for a quick hug before she took the stage and I slipped into a seat at the back of the room.

Alice recounted a brief history of the PF-02341066 trial to an audience of about 350 Pfizer employees; the majority of whom were pharmaceutical reps. She was joined onstage by Robert Martensen, an author and physician, who happens to have ALK+ NSLC  and who began taking Xalkori last summer. Of special note, the histology of Dr. Martensen’s lung cancer is squamous, so here is a splendid example of the old exception to the rule theory.

It was interesting to hear the dialogue between two doctors; one of whom was also the patient. At the conclusion of their presentation, we had a ‘practice’ session, and I was able to meet the other ten patients whom I would be joining for our portion of the program the following morning. All of them, (except for myself) were current participants in phases II and III of the crizotinib (Xalkori) trial and had enjoyed positive results that ranged from stable to a whopping 100% response.

On Wednesday morning the eleven of us, plus our caregivers, made a rather dramatic appearance onstage as we lined up behind a white scrim which was then dropped at our feet (the reveal!). After we were individually introduced by the moderators (hello Jonathan and Chris), our families retired to the audience.

It was a moving experience, as each patient took turns describing the impact Xalkori had made on their lives.  I found it rather an amazing vantage point as well; looking out over the sea of faces in the audience, many of whom were wiping away tears.

Each patient was given a chance to answer some prepared questions. When it was my turn, I commented that it wasn’t exactly fair that the moderators were the only ones with teleprompters, given the fact that most of us on stage had done some really hard drugs.  I also asked the audience to take a good look at the eleven hale and hearty individuals (patients) in front of them and to remember that we each had stage IV lung cancer. Given the ravages of the disease as well as the difficult side effects of most traditional treatments, our current state of health was perhaps the most amazing thing of all. Not only had Xalkori given us more time, it was quality time.

After the session concluded, we had the chance to meet some of the people behind the development of crizotinb, including Keith Wilner, Pfizer’s Senior Director of Clinical Research, and then perhaps the biggest rock star of all,  Dr. Jingrong Jean Cui, the scientist who invented crizotinib.

Dr. J. Jean Cui with some of her biggest fans

Jean is the epitome of intelligence, diligence, humility (!) and creativity. She shared with us a tantalizing glimpse of just what lay behind the synthesis of a complex molecule that would become Xalkori.

And this is it: Xalkori

Pfizer thoughtfully arranged a luncheon for the patients and their families, and we were joined by several key members of the team involved in development to market phases of PF-02341066/crizotinib/Xalkori. Possibly not your usual cafeteria chatter.

I had overheard that there would be a tribute to my friend Kevin Brumett, who was one of the very first people in the world to go on what was then know as PF-02341066. Kevin passed away in May of 2009, just a week after marrying his sweetheart, Stephanie Fellingham. With his boundless optimism, energy and generosity, Kevin touched the lives of many. In January of 2009, he had been invited to speak at the Pfizer laboratories in La Jolla, an experience he found profoundly moving. It was only fitting to close the Xalkori launch with a tribute to this exceptionally brave young man who eagerly went down what was then an unproven path.

There was time for a short and much needed break; I felt emotionally tapped out at this point. Then we crowded into buses with the pharmaceutical reps to join in a team building exercise at yet another venue. It was actually a great chance to get to talk to more people, and the product of the exercise was some lovely murals for The Lung Cancer Alliance of Massachusetts.

When finsished, we moved upstairs for dinner, and once again I enjoyed having the chance to converse with members of the crowd. An unsolicited plug for Pfizer here; I was truly impressed by both the sincerity and level of commitment exhibited by their employees. Just a really great group of people.

Just when I thought this day couldn’t be any more meaningful, Dr. Tom Lynch, my original oncologist and now Director of the Yale Cancer Center, walked up to our table. After a few moments to catch up, he took the podium, and knocked the socks off a crowd that on the third and final day of the Xalkori launch, was by all rights exhausted. Tom possesses the uncommon combination of brilliance and a real knack for performance; he is a phenomenal speaker. And his enthusiasm is absolutely infectious. And, of course, I couldn’t help but be pleased that he included the before and after image of my lungs (pre and post crizotinb/Xalkori; nice to see them on the big screen!).

The evening concluded with a moving presentation by Diane Legg and Rich Monopoli, friends and associates of mine as well as co-chairs of the Massachusetts Lung Cancer Alliance. What a day!!

Before I sign off, I would like to say how pleased I was to have people come up and introduce themselves and to say that they read my blog; I am honored. It was also wonderful to be reunited with those I’ve had the pleasure of meeting before; both filming in Meredith and on my trip to the facility in Connecticut. In closing, thank you, Pfizer, for making us feel so welcome and please, keep up all of the good work. You will never know how much it means to our friends, families, and those of us with lung cancer.