Tag Archives: Xalkori

Just a little documentary

Posted on March 3, 2020 | 15 comments

I have now been in phase I clinical trials for two Pfizer drugs—crizotinib and lorlatinib (Xalkori and Lorbrena). A few weeks ago I travelled to La Jolla for a CNN produced documentary. Perks of this project included spending time with rock star researcher Ted Johnson as well as a tour of the Pfizer Labs. And of course anytime I get to see the sun setting over the Pacific ocean, that’s a plus as well.

As for the documentary, it speaks for itself. Give it a little gander. Pfizer, thanks for letting me represent. And for keeping me at this party.

xo

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The pass it on power of media

Posted on June 21, 2017 | 8 comments

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 🙂

 

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Posted in ALK mutations, Connections, MGH, personalized cancer care, Uncategorized, Xalkori

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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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Taking the leap into clinical trials

Posted on December 7, 2015 | 16 comments

I was initially diagnosed with non small cell lung cancer in April of 2005. My tumor was large (5 centimeters); a poor prognosticator. However, it had not spread beyond my lungs and I was staged at IB. One week after diagnosis I had the lower lobe of my left lung removed. As I was recovering from surgery my new oncologist introduced himself; Dr. Tom Lynch. I had no idea back then, but I was incredibly fortunate to have Tom select me as a patient. The reason behind his coming to me rather than the other way around? As a young (age 45) non smoking woman, I fit the profile of someone who might be EGFR+ and Tom was an early innovator in the investigation and treatment of EGFR+ patients.

I tested negative for an EGFR mutation but in the process acquired arguably one of the best oncologists in the world; someone who was always forward thinking and cutting edge in his approach to treatment. In fact, I was offered a chance to enroll in my first clinical trial soon after surgery. Because of the size of my tumor, adjuvant chemo was indicated and a trial that would include the addition of avastin was proposed. I was having a difficult time even being convinced to have chemotherapy (Tom was adamant) and I couldn’t wrap my head around the possibility of also being a medical research subject. As it turned out I would not have been a good candidate anyway–I am a bit of a bleeder and I was coughing up blood for weeks post lobectomy (there is a small but significant increased risk of serious pulmonary hemorrhage secondary to avastin).

Fast forward to September of 2008, two months after I’d been restaged to IV and advised that I likely only had three to four months to live. At my scan review after two months of tarceva–tried as a last ditch effort even though I was EGFR-, there was nothing but bad news from the radiologist. However Tom shared that a sample of my biopsy had been submitted for further genetic screening and had come back positive for an EML4-ALK translocation (another example of how ahead of the pack he was—the ALK mutation had been identified as a driver in NSCLC only months prior to that).

As we discussed the significance of this finding we also reviewed my options going forward. The way Tom saw it, there were four possible scenarios. I could stay on tarceva, return to traditional chemotherapy, do nothing (that option only underscored how serious my situation was) or attempt to enroll in a phase I clinical trial that targeted ALK mutations such as the one that was driving my cancer.

Would you believe me if I said I never hesitated but instead leapt at the opportunity to be in a clinical trial? Why now but not back in 2005?

This is why.

This image of my scan says it all. The upper lobe of my left lung was now almost completely clouded with consolidated ground glass tumors which had spread to my right upper lobe. And I had been told that I might have three to four months to live two months ago. The math was easy—I had almost run out of time and out of the four options I’d been provided with, only one seemed to offer a glimmer of hope.

And glimmer is the operative word. There was no precedent for me back then—no reason to believe that this trial might actually prove effective. All Tom could offer me was the fact that I had been preceded by one other participant at MGH. ALK+ like me but so debilitated by disease that they were confined to a wheelchair. Their initial response had been extremely encouraging, to the point where the wheelchair was temporarily abandoned. But then they had died, in part due to the toxic effects of the trial drug on their liver.

So this is what I knew. One before me with a promising response who had succumbed both to disease and to the toxic effects of therapy. That the experimental therapy could in fact prove fatal to me as well. But that my cancer would certainly kill me if I did nothing. An easy choice, after all.

And so, on October 1 of 2008 I had my lead in dose of the drug that would eventually be known as Xalkori.

 

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Posted in ALK mutations

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Loud uncle paired with a quiet whine

Posted on May 8, 2014 | 47 comments

Yesterday was a humdinger. Two treatment-related mistakes in, I realized that not only am I over-overwhelmed, it’s time to do the big ask: Help!

Shortly after after posting my previous blog (and following much back and forth), Dr. Shaw and I decided that canceling my mediation was not a good idea. The prospect of getting three lawyers to readjust their schedules just felt too daunting. And, until we reach a settlement, I am still completely dependent upon David financially and that is not where I want to be.

Alice (Dr. Shaw) very kindly opined that medically it would be okay to wait a week. I emailed back that I would then delay wash-out and continue taking my Xalkori for one more week. This was her adorable response:

Yes. Twice per day! 🙂

Well, evidently I overdid it by one pill, and because of that the trial start date could be delayed (really?). That was mistake number one. The second screw-up was getting confused as to the time of a scheduled MRI and arriving fifty minutes late. They graciously squeezed me in but it easily could have meant another trip/potential delay.

So let me describe my little day from hell. I was up at 6:30 am with the intention of getting on the road by 7:30 for a 9:30 am dermatology appointment. A mere 24 hours earlier I had been looking at my left shin with my glasses on. I have very long legs and increasingly poor eyesight and if my glasses aren’t on, anything below the knees is blurry. Well, there’s a mole mid-shin that a dermatologist at MGH has been watching, and what I saw when I looked closely was concerning—particularly the numerous small black spots that now peppered the surface of this little ‘beauty spot’. I had a basal cell cancer removed at the age of thirty and my father Ollie had numerous basal and squamous cell cancers as well as melanoma. My chart must have me ID’d as high risk, because when I called for an appointment they marked it urgent and got me in yesterday.

Anyway, that’s the back story. I got on the road by 7:45 and realized I had missed Peter’s 7:20 wake-up call. Placed that–we’re getting this routine down, and as silly as it may seem, I love speaking to him briefly each day. And then I settled into what is always a horrific commute. What can take half an hour turned into and hour and a half. I got to dermatology just before my appointment. Fifty minutes and five magazines later I asked the receptionist if I’d be seen soon—as I had more appointments over at Yawkey starting at 11 am. Oh dear. Seems she forgot to let them know I was there…she was very apologetic and I was seen shortly thereafter but it was some additional stress I could have done without.

Anyway, one look at the mole and the dermatologist said ‘biopsy it’. His feeling was that it represented a basal cell, but given the pigmentation and appearance, melanoma could not be ruled out until the pathology report came back.

I had a punch biopsy performed and I will hear the result in seven to ten days. As the doctor said (a wee bit too glibly, I felt). ‘You don’t want to hear back from me.’ If a nurse calls, I will know it is reassuring news. If it’s the doctor, do you think hanging up would make it go away?

I had to practically run back to the Yawkey building (a challenge at this point) as an Echocardiogram was scheduled for 11 am. I was ten minutes late and breathless to boot, but the test proceeded anyway. Evidently I shall have these periodically during the upcoming trial, as there have been some (asymptomatic) reports of prolonged QT interval.

After that, it was labs and an EKG on Yawkey 7B. I spoke to the trial nurse and my scheduler, and ended up with just enough time for lunch before I had to begin fasting for my pre-trial abdominal CT scan. I enjoyed my rushed meal but for dessert I had a brain fart—thinking I had time to sit in the MGH cafe and browse on my laptop before heading over to Chelsea where the scans were scheduled. Oops. At 3:20 I realized my brain MRI was supposed to occur at 3:15. I placed an apologetic phone call and did my best to rush over—something that is impossible at that time of day. Forty five minutes later I arrived at Imaging in Chelsea and (because sometimes you do what you have to do), drank one of those hideous barium shakes. I did beg off the second one.

Well, it looked as if my MRI would need to be rescheduled, but bless their hearts, they squeezed me in. It was almost 7 pm when I left. Exhausted.

So here’s the ask. I’m an independent sort by nature and a good deal of my journey with cancer has been rather solitary. Sometimes that has sucked but mostly I have managed (got my own back sort of thing). However, I confess to harboring a small amount of envy for those cancer patients who have a lot of support. Medically I’ve got the best squad a girl could ask for but I’m thinking I could use a little…Team Linnea. Family/friends/folks who might be willing to go to appointments with me. I’ve got some long ones coming up as I start the trial and it is always easier with company.

As soon as it is finalized, I am going to publish my schedule. If you’d like to spend a day in the life of a patient in a phase I clinical trial, don’t be shy! All comers welcome!

And while you’re at it, please cross your fingers that the skin biopsy comes back benign (best) or basal cell (better than the alternative). I don’t need any more wrenches thrown into this affair. My son August sent me this e-card, which nicely sums up my current sentiment:

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Posted in Clinical Trials, Coping

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Update

Posted on April 29, 2014 | 16 comments

I had my CT scan and appointment with Dr. Shaw yesterday. As anticipated, the news is not particularly good. The radiology report reads: ‘A mixed attenuation lesion in the left lower lung zone now measures 8.4 cm, previously 6.9 cm. There are also increased small ground glass nodules adjacent to the lesion. The central solid portion of the lesion now measures 6.2 cm, previously 4.4 cm. A mixed attenuation lesion in the anterior right upper lobe now measures 1.4 cm, previously 1.4 cm. Another right upper lobe lesion now measures 7 mm, previously 4 mm. Inferior right upper lobe mixed attenuation nodule measures 1.5 cm, previously 1.2 cm—Interval increase in size of dominant mixed attenuation lesion in the left lower lung zone and some of the right upper lobe nodules consistent with worsening lung cancer.‘

Still, were I not symptomatic, Dr. Shaw would consider leaving me on Xalkori for a little longer. However, upon examination she noted how very wheezy I am and we both agreed that it is time to try something else.

Two weeks ago I realized (with no small degree of horror) that I had gotten mixed up on my medication and had been taking my Xalkori only once a day. At most I made this mistake for two or possibly three weeks but I was absolutely mortified when I reported my discovery to Alice (Dr. Shaw). Hopefully it had no major impact upon my response, as my symptoms had never abated. However, it is a potent reminder that I have been terribly distracted. As Alice remarked, I have a lot on my plate.

I am to start the new trial on the 13th of May. We have a scheduled mediation for our impending divorce on the 16th and my first impulse was to push back the trial date. Last night I did a lot of soul searching and realized that I need to get my priorities straight (the mediation can wait if necessary).

In addition to my own worries, Pete is experiencing some challenges (kid can’t get up in the morning) and I’ve been back and forth to Exeter a number of times. Desperate times call for desperate measures, and I am setting my alarm for 7:20 every morning so that I can place a rise and shine call to my sleepy son. Yesterday I had to call repeatedly; today he picked up on the fourth ring.

I confess to feeling somewhat overwhelmed. However, my internal dialogue moves quickly from wallow to wonder; I am still here.

Live, love, life.

 

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Posted in ALK mutations

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A Bear behind

Posted on April 21, 2014 | 13 comments

I’ve been gone for awhile now and I feel a stranger in my own blog. I apologize for such an extended silence—I know that in this community the lack of an update is worrying. So let me start by saying I’m okay: not exactly jump up and down great, but hanging in there.

By way of explanation; I am happy, happy, happy. Mentally, I have never been better. However, physically the situation is a little more complicated as it would appear I’m not responding to treatment. Although I’ve not had a CT scan since starting back on Xalkori, my cough, nocturnal bronchorrhea production and a troubling shortness of breath suggest that my cancer is spreading. In a few weeks, I shall likely start my third clinical trial for an inhibitor that targets both ALK and ROS-1 mutations:  PF-06463922.

I am mindful that it is a blessing to continue to have options. I am also entirely cognizant of the fact that if I don’t respond to the trial drug, those options will be rather limited. It is a sobering realization and yet I continue to focus primarily on the positive aspects of my ongoing survival.

For instance, yesterday was not only Easter, it was Peter’s seventeenth birthday. I was diagnosed with lung cancer in 2005 just before Peter turned eight; two weeks ago I quietly marked nine years of surviving post-diagnosis. Happy Birthday Peter and I am thrilled to be able to celebrate with you!

Life really is remarkable—in all its ups and downs. My own has been topsy turvy for some months now and at some point I felt the need to pull back from blogging and simply concentrate on the day to day business of restructuring existence; more on that later.

First, a little personal history: it was just over fifteen months ago when I resumed chemotherapy. Simultaneously, my marriage was hitting the skids. I felt sick, scared, lonely, trapped and was well on my way to becoming someone I find intolerable—an unhappy person.

Without a doubt, I had hit my personal low point and for the first time, I considered stopping all treatment and simply saying enough. Briefly, that. Instead I took a step back and assessed the situation. It wasn’t going to be easy, but I began to formulate a plan to not only survive, but to prevail.

pre·vail
priˈvāl
verb
1.
prove more powerful than opposing forces; be victorious.
“it is hard for logic to prevail over emotion”

My first priority was Peter’s immediate future, and to that end much hard work went into the private school process. As you know, he was accepted to Phillips Exeter Academy where I am happy to report he is thriving. I am particularly proud of the fact that he qualified for the novice crew team this spring—it turns out rowing is something that Peter really enjoys and has the potential to be quite good at.

My second goal was rather short term, and that was to get through chemo. I did, and after six months of infusions, enjoyed almost nine treatment-free months. Even though my cancer progressed, my body got stronger, and I really needed that physical strength when it came time to move.

And what a move it was. Deciding to separate and ultimately get divorced after more than twenty one years of marriage was huge; particularly under the circumstances. Obviously, it is not a decision that was made lightly.

My dear friend Melinda has remained my guardian angel throughout this process, offering counsel as well as emotional and financial support at various junctures. We’ve been pals (and partners in crime) for almost five decades now and I simply can’t imagine life without her.

I’ve also had some help from a surprising source. At that low, low point many months ago, lying in bed one night after chemo, I felt the need to be both protected and held. I searched my imagination for the appropriate companion and found that it was a bear that I was looking for. I could not only see this bear, I could feel its presence beside me. And I asked this large animal to hold me close; to keep me safe. In exchange for this protection, I told the bear that when I died, it could eat me.

Now this may sound really bizarre—a little crazy even. But, to me it was a perfectly fair exchange. I truly believe that we are all part of one living system, and that when we take our final breath, our energy is dispersed. To be eaten by another creature is a logical repurposing of energy—we do it ourselves every time we dine on something that was once living (plant or animal). I realize some of you may be horrified—and once again I offer my apology. However, know that for me the current tradition of embalming a body is anathema–and cremation is not much better. If I cannot be eaten, I would rather decay and become part of the soil.

Some weeks ago, there was a social quiz on Facebook–‘What is your spirit animal?‘ I took the silly thing out of curiosity. It was already obvious to me what my spirit animal was and I was certain the quiz would get it wrong.

Well, surprise, surprise, my spirit animal is The Bear. Ha! The questions really were seemingly random, but somehow, someway, it turned out right.

Bear really does have my back.

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Posted in Changes

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Downs and ups

Posted on February 11, 2014 | 22 comments

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.

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Posted in ALK mutations, Attitude, lung cancer, scans, Xalkori

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Xalkori Launch

Posted on December 7, 2011 | 12 comments

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.

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Posted in ALK mutations, crizotinib, PF-02341066, Xalkori

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FDA approval for crizotinib and a new name: Xalkori

Posted on September 1, 2011 | 33 comments

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.

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