Monthly Archives: November 2009

Thanksgiving in Marfa, 2009

It has been the most wonderful week in Marfa; with nary a moment to write and an internet connection that was just way too slow even if I’d had the time. Pete and I are sitting in a hotel next to the El Paso airport (a hotel with free Wi-Fi), as a rare snowstorm is going to make travel from Marfa tomorrow morning difficult. I am sorry to miss this weather “event”, but as David had to transport us, (he is staying in Marfa with Jem for three more days), it would have meant some possibly treacherous driving for him. The upside is that I now have the time and the means to post a blog.

Where to start…family, food, fun:  all in copious amounts.  I received some amazing gifts, including a fat tire bicycle from the Owsley family, a pecan pie, and a small Rebecca Holland sculpture.  August is working on a song for my birthday and Jem is making a necklace.  Pete’s present was a piece of petrified wood.  My sister Laura came with birthday cakes for me and for Jemesii, who turned 25 on the 16th.  It was noted that I was now a half century, Jem a quarter, and Pete one eighth of a century in age.

The Thanksgiving meal was outrageous.  No one left the table hungry, and we laughed until our cheeks hurt.  It was really one of the best parties ever, and I am so glad (and honored) that much family made the long drive to join us. There was one more magic moment.  After nightfall, David called us outside to look up at the moon. It was surrounded by a large white halo: a perfect white circle ever so much like the one I imagine protecting us all.  I couldn’t help but feel this a positive omen; certainly I had received the best gift ever.  More time!

Marfa: in bits and pieces

We have had a wonderful week in Marfa.  Family, food, fun, and lots of love and laughter.  I’m a bit older than I was the last time I posted, and I have to say that the view is great from this side (the second half of the century).  Not only have I been far too busy to write, but I haven’t had a reliable internet connection.  Uploading anything takes a very long time:  hence, I am going to do a bunch of mini posts until I return to New Hampshire and a solid internet connection on Tuesday evening.

The first photo is looking up into the center of the Marfa Courthouse.  In the second image, some of my family are gathered around the splendid tin chandelier at the top.  More to follow!

Packing up my saddle bag

Rainy, rainy day here.  Just as well, so that I am not tempted to exchange my chores for a walk outside.  In two days we are hopping on a plane, and I’ve got lists of things to take care of.  Stop the mail and papers, refill prescriptions, pack, clean the house, do the laundry, make a carrot cake for Jem’s birthday, take Pete’s guitar to the luthier for a repair, drop the dog at camp (aka:  the kennel). Unfortunately, I must take frequent breaks from all this bustle, as my ankle swells up like a water logged sausage when I am on it too long.

All of this preparation is so that we can make our annual pilgrimage to Marfa, Texas for Thanksgiving.  It’s going to be extra special this year, as I was born on Thanksgiving in 1959.  This year my birthday will once again fall on that particular holiday and I will be hitting the half century mark.  We will be joined by all three of our children as well as three of my siblings and most of their kids. Everyone contributes beer, food (including my brother John’s famous chile) and wine.  Margaritas are on the house.  My husband David makes a very fine Thanksgiving feast, replete with a free range turkey.  My contribution will be some of the side dishes and I’m a whiz at doing dishes as well.  Actually, almost all of the adults who will be present have worked in restaurants and we’ve covered all the jobs from dishwashing, busing, serving to chef–so there is never a shortage of qualified help (and we’re all good tippers as well). Our assorted spawn will take turns djing; exposing their parents to a wide range of musical styles, including our son August’s own hiphop recordings. Soccer will be played, bikes and scooters will be ridden, and at least three of our party will play a round or two of golf at the Marfa course–“The Highest Golf Course in Texas”.

And I’m preparing to bask in all that warmth from the sunshine and my gathered family.  I don’t know how much time I will have to write in the next week, but I will certainly post some photos.  Until then, wishing you all a very Happy Thanksgiving.  To life!

Some of the gang last year- photo by Greg Owsley

The lung cancer blues

Well, I got a good report on my ankle yesterday.  The x-rays look great and I was able to walk out of the office wearing two shoes.  It is certainly a more rigid version of my former ankle, and yet prone to swelling, but hey, it works.

David accompanied me to Boston, and we were joined by Jemesii.  I was to be filmed by a local TV station for a program that will air in January, and they had requested that I bring some family members. Because I have had such a good response to the PF-02341066 trial, there has been a fair amount of interest in my story by the media. We are a pretty private family and definitely not looking for our fifteen minutes of fame, but I’m not one to pass up an opportunity to be an agent for social change.  Talking to the media provides me with a platform to increase awareness of lung cancer.  In addition, I have expressed my willingness to participate in promotions for the Cancer Center at Massachusetts General Hospital.  MGH is a “product” I really believe in and therefore enthusiastically endorse:  I am alive today because of their fine team of health care providers.

Between my scheduled appointment and the filming, it was a long day.  Peter had gone with a classmate after school, and we picked him up at his friend’s on the way home. David and I had eaten enough at lunch that we skipped dinner, so we grabbed some fast food for Pete. I settled in with the day’s newspapers.  The science section of the New York Times featured an article about a man my age who was enrolled in a clinical trial for glioblastomas, the most deadly and difficult to treat form of brain cancer. This gentleman was only the second subject on trial, and the first, although initially responding very positively, had died.

I was the second subject with lung cancer to enroll in the trial at MGH (although there had been a handful of others at different facilities).  The first participant at MGH had also had a dramatically positive response, but had gone into the trial at a very advanced state of disease and subsequently died.  I felt such a connection to this man in the article: such understanding of what would lead him to try something that clearly hadn’t had the desired result for his predecessor.  When you are being chased by a monster and you come to the edge of a cliff, to jump begins to seem like a viable option.

Suddenly I was overcome with fatigue and emotion.  So sad, so tired of people getting sick, so fed up with cancer.

It had been a difficult day for the online community I participate in as well.  Two people who have been on the board for at least long as I have were having a contentious argument about, of all things, sugar and its contribution (or not) to the spread of cancer.  One member, who has always been a great resource for information regarding nutrition, felt as if she was under personal attack and ended up deciding to leave the board.   Some members took sides as others counseled tolerance.  One very wise post posited that the fuss wasn’t really about sugar, but about all the loss of what is sweet in life that accompanies a diagnosis of lung cancer.

That observation was spot on for how I was feeling yesterday.  A profound mourning for my earlier life and the lack of innocence that is part of coping with a terminal illness.

One week from tomorrow, on Thanksgiving, I will turn fifty.  I couldn’t be happier about this, as there was a time in the not too distant past when I didn’t think I’d see fifty.  But there are days, yesterday among them, when gratitude wears thin.  I miss being able to picture myself as an old woman; to take for granted that I too would live another twenty, thirty or even forty years.

But then I am stopped short by the fact that I am now aware of far too many people in their thirties and even twenties who are battling lung cancer.  Most of these people never smoked, as, oddly enough, lung cancer in never-smokers generally occurs at a younger age.  It is just so…unfair. Unacceptable really.

I am still sad and a little tired today.  I won’t deny that there is a part of me that just wants to go lay on a beach in the warm sun; to forget about lung cancer.

But I’m not really one to lay around when there are things to be done.  It is no longer just a matter of my personal survival; I want so for all of us to pull through.  I want my friends who are in their twenties to celebrate their fiftieth birthday someday, I want us all to continue surviving.

A gorgeous day in November

L1010392Yesterday we were lashed with the remnants of Hurricane Ida, but when we awakened this morning, the rain had been replaced by a thick fog. That burned off rather quickly, and today has been warm and moist: almost like a California winter.

David and Peter worked to clear some small brush, while Buddy happily hunted for chipmunks.  Peter found a sweet little bird nest.  Woven in with the twigs were blue bits of nylon from a tarp that had covered much of the house while it was being renovated. In addition, there were strands of horse hair:  an old mattress stuffed with horse hair has been flung over some hay bales as a target for Pete’s bow.

I must still wear my aircast–at least until Tuesday when I will have an x-ray of my ankle done.  I have been using my crutches less and less, and today I left them inside when I ventured out to join the boys.  I took a hike (a bit of a hobble, actually) to just below the granite ledges.  I hadn’t been to this part of our yard since late September.  I brought my camera with me, and the photo above is the best of today’s efforts.  The moisture makes the oak leaf look almost like snake skin.

The smells outside were amazing as well.  Leaf litter, sap, moist earth.  As I walked through the woods back up the hill, I almost stepped on a garter snake basking in the warmth. Suddenly I was aware of a sound:  like faint rain or something sizzling.  I looked down and the leaves were covered with a huge hatch of little tiny black bugs, about the size of fleas.  There were millions of them, so dense that individual leaves appeared dipped in pepper.  They were all moving, and the sound was from their bodies as they hit the leaves.

The photo at the bottom is of a fungus growing from a fallen birch near the house.  Peter thought it very funny, and so I decided to include it as well. Happy Sunday.L1010409

ABC World News November 10th, 2009: some questions and answers about PF-02341066

On Tuesday night, November 10th, ABC World News aired a story that was a follow-up to their June 2nd, 2009 report on personalized cancer care. Tuesday’s report featured Bill Shuette, the gentleman I had the pleasure of meeting last week. Click here to see the report.  When the story about my response to PF-02341066 aired in June, there was a flurry of interest in this new “wonder” drug. Many people were disappointed that this treatment was not the answer for them or their loved ones. However, for a handful of people, it was indeed a lifesaver. Bill is among them.

Once again, message boards are heating up with interest, and I would presume that MGH and other facilities that are  sponsoring the third phase of the PF-02341066 trial will field many phone calls.  As the ALK mutation occurs in a minority of lung cancer patients (3-7% of lung cancers, adjusted up to c. 13% for light to never-smokers), this treatment will not be appropriate for the majority. However, I have no doubt it will prove a godsend to some.

Traffic on my blog was much heavier yesterday, with many people logging on to read about PF-02341066.  As I have been on trial for more than 13 months now, I am in a somewhat unique position to provide the perspective of a trial participant, or subject.  This is, of course, not to be confused with medical advice which I am not qualified to give.  What I can do though, is tell you about my own experience with this drug.  Let’s pretend I am being interviewed:

How is the drug administered?

The drug is in capsule form.  At this stage of the trial, 250mg twice a day is the standard dosage, as it was when I entered the trial.  I take three gray capsules in the morning, and three more at night.

The first time you took the pills, what did it feel like?

I felt a little woozy; just a bit different or altered.  I had severe diarrhea within an hour, as well as mild nausea.  The diarrhea cleared up after several episodes that day, as well as administration of some immodium, and it was not an issue again. I felt somewhat fatigued as well.

Were there potentially more severe side effects as well?

My heart rate was monitored very closely initially, and at one point I had a questionable EKG (mild arrhythmia).  It happened once and and proved to be a non issue.  There was also the potential for liver inflammation, and my liver enzymes rose sharply after a few weeks.  They never reached a dangerous level of concentration, and quickly began to decrease before settling at a slightly elevated level where they remain.  It is interesting to note that when I had to take a holiday from the drug during surgery for my ankle, my enzymes dropped to a level that was very close to normal. Perhaps a week after the onset of regular dosing, I awoke with a very noticeable visual disturbance:  it was as if everything had a light trail or ghost image.  This effect was most noticeable in low light conditions, and/or when I was transitioning from dark to light.  I would eventually learn that this is a condition called palinopsia and is a side effect of certain drugs.

What were the positive effects and how quickly did you notice them?

When I started the trial, I was coughing almost constantly and was noticeably short of breath.  When I lay down at night my lungs “rattled” in a way that was all too familiar:  I knew it was the cancer.  I could tell that my immune system was depressed in general, as I had begun to have secondary infections and to feel crummy all the time.  It was obvious to me that I was dying, and it was scary as hell.

The first dose of PF-02341066 was a lead-in dose.  This meant that a whole week passed before I began daily dosing.  Within days of taking the full dose, all of the above symptoms began to fade.  It was truly amazing.  By two weeks, I had no cough and I could breathe so much more freely.

Were there lingering negative side effects?

Nausea hasn’t been a big issue for me, but I do have days where I am queasy and on two occasions I have vomited.  In the beginning, as a variation on the trial, we were not allowed to eat for several hours before and after taking the capsules, and the nausea was much more bothersome.  Taking the drug on a full stomach definitely helps.  For perhaps the first eight months, I would seem to hit a wall of fatigue at about 8 pm.  I have noticed that exercising actually makes this fatigue far less noticeable, and I can stay up until 9 pm now–even stretching it to 10 some nights.  I definitely require more sleep than I once did; perhaps averaging ten hours a night.  After a few months, I became aware that the peripheral neuropathy in my feet and hands (a lingering result of chemotherapy) was more noticeable again.  I am no longer so aware of it.  The palinopsia, or visual disturbance is not so noticeable either, although driving at night is more challenging than it once was.  I am unsure as to whether or not these side effects have actually lessened, or if my brain has simply adjusted to a new reality.

After several months of being on trial, I had a very sharp pain in my chest upon swallowing and I coughed up a small amount of blood.  After questioning me about my symptoms, Dr. Shaw felt that it was esophageal in origin.  A look down my throat with a scope confirmed the presence of an esophageal ulcer; likely as a result of an incompletely swallowed capsule.  It was quickly resolved with several doses of Carafate.  I now make sure to drink lots of water with my pills and I usually take a bite of something as well (such as applesauce) to make sure they all went down.

One interesting, if benign, side effect has been a sharply increased sense of smell. I can smell everything now with such acuity, that I feel kind of like a bloodhound.   There are situations where this is not a good thing, but for the most part I enjoy this sharpened perception.

And how about lingering positive side effects?

Oh yeah.  I feel great.  Better than I have in years.  I am strong, my immune system is in balance and perhaps more vigorous than it had been previously.  I wake up every morning and sing a little song.  It goes something like this:  “I’m alive, I’m alive, I’m alive.”

What lifestyle changes has enrollment in this clinical trial entailed?

Well, obviously I commute to  MGH in Boston with greater frequency.  In the beginning, it was somewhat intense, but now I go once a month for PK’s (pharmacokinetics), a physical with Dr. Shaw and to pick up my drug supply.  I have spiral CT scans every two months.  I must obtain an ok for any new drug, prescription or over the counter, with the trial team before I take it.  Because of my slightly elevated liver enzymes, I avoid hard alcohol for the most part (occasional teeny martinis and wee margaritas), but still drink red wine in moderation.  It is necessary to record the time I take my drug each morning and evening as well as the time of the meal just prior.  This is certainly the most tedious part, and I am not always good at remembering.  Once or twice I have forgotten to take my dose of PF-02341066 as well.  Luckily, it has a rather long half life, and I have simply waited until the next dose (per my doctor’s recommendations).  And sadly, I can no longer eat grapefruit or drink grapefruit juice, as it interacts in a negative way with the drug.  Ending on a truly positive note; my ability to travel, exercise, and go about my daily life has in no way been restricted.  Although, when I broke my ankle Marguerite and Jose did tease me that there was a “no broken bones” clause in my clinical trial contract.

So is PF-02341066 really a miracle cure for cancer?

No.  It is not a cure.  Because I have a mutation of the EML4-ALK gene, my body would again manufacture cancerous cells if I were not taking an ALK inhibitor such as PF-02341066.  This is referred to as onco-addiction:  tumor cells are dependent on activated oncogenic signaling pathways, and the ALK inhibitor disrupts this process.

How long will it work for?

We are on a frontier here:  so the correct answer is that no one knows for sure. EGFR inhibitors have been effective for some individuals for several years and in some cases, longer.  However, it is not unlikely that eventually the cancer will “find a way around” these inhibitors.  The fact that I have had stable scans for 13 plus months is a good sign, and I have a gut feeling that the cancer will be held at bay for some time.

So what then?

I can only hope that PF-02341066 will continue to be effective for a long time, and that other drugs that target ALK (and other mutations, for those who are ALK negative) are in the pipeline.  In the meantime, I have been given the gift of more time, and each day is precious.  I also have the satisfaction of knowing that my enrollment in a clinical trial has in some way contributed to the search for more effective treatments for lung cancer, and, perhaps eventually, for some a cure.

Catching my breath before chemo: May, 2005

The first weeks following my lobectomy were not easy. It was impossible to get comfortable, due to my incisions as well as my bruised rib cage. In addition, I felt so physically diminished; frail really. Once home, my cough returned, sending me back to the hospital for a scan. It was a result of residual fluid in my lungs, and I began to use a nebulizer in an attempt to clear them. I spent a lot of time sleeping in my lazy girl, as the pain medication made me very groggy. I would get up and move around as often as I could, including slow walks around our yard.

My courage would utterly fail me when it was time to change the dressings. This task fell to David, and despite his extreme care, as the bandages came off, so would some of my skin. I had developed a sensitivity to Tyvek, and my skin was now extremely friable. In addition, the incisions where the drainage tubes had been would literally gush each time I coughed: it was horrific.

I should note here that many facilities now perform VATS (video-assisted thoracic surgery) rather than lobectomies on stage I patients, and as it requires three or four small incisions and no spreading of the ribs, recovery is far quicker.

However, the ability of our bodies to heal is remarkable, and slowly I returned to some semblance of my old self. I had lost weight, and in anticipation of the fact that I might lose more during chemotherapy, I did my best to eat. I made more loops around the yard, and David moved the exercise bike into the living room so that I could take some spins on that.

Dr. Lynch had explained that we would give my body just enough time to recover from surgery but not so much that any cancer cells that might be lurking could get a foothold. It was a 6-8 week window–and we would start my chemo at seven weeks.

Just prior to this, I had a port, or porta-catheter, surgically implanted under the skin on my chest. This is a common procedure before starting a course of chemo. Here is a good description of a port that I found online (*We Are Macmillan. Cancer Support–a site from the UK):  “An implantable port is a thin, soft, plastic tube that is put into a vein in your chest or arm that has an opening (port) just under the skin.  This allows medicines to be given into the vein or blood to be taken from the vein.  The tube is long, thin and hollow, and is known as a catheter.  The port is a disc about 2.5-4cm (1-1 1/2 in) in diameter.  The catheter is usually inserted (tunneled) under the skin of your chest.  The tip of the catheter lies in a large vein just above your heart and the other end connects with the port which sits under the skin on your upper chest.  The port will show as a small bump underneath your skin, which can be felt but is not visible on the outside of your body.”

I disagree only with that last part–you could definitely see my port, which I thought was a little freaky (made me feel like an android).  The surgery itself was quick, although I had a minor complication as one of my stitches became infected and necessitated another trip to the hospital to have the stitch removed as well as some topical antibiotics. Ironically, the scar from the port is nowhere near as uniform as the major incisions and in fact I have been told that it resembles a bullet wound. I suppose I could concoct some wild stories if I were so inclined.

In truth, what I had already been through was a bit like combat, and the chemical warfare was about to begin.

Shine a Light on Lung Cancer

imagesThursday night I attended and participated in the Lung Cancer Alliance of Massachusett’s Shine A Light On Lung Cancer.  Unfortunately, my husband was away on business in Colorado, and Peter had a role in the school play that night, which Jemesii attended. That morning, as I dropped Pete at the bus stop, I wished him good luck and hoped that neither one of us would suffer public humiliation that evening.  He gave me a fist bump and was off.

It fell to Jem’s friend Hannah to be my “family” that evening, a role she performed seamlessly (I got lots of compliments on my beautiful daughter).  She also provided the all important futon at her apartment after the event.

It turned out to be an extraordinary evening:  a call to action, a celebration of survivorship and a tribute to those who have passed. Both my former (Dr. Tom Lynch) and current (Dr. Alice Shaw) oncologists spoke, as did the wife of a very special friend who lost his battle with lung cancer this spring (Stephanie).  We heard tales of hope but also sorrow.  The need for compassion for our disease as well as the critical lack of funding for lung cancer research were highlighted.  The crowd of approximately 400 included survivors, caregivers, family, friends and advocates. We laughed, we cried; we held each other.  I was personally overwhelmed by the opportunity to meet so many others involved in this fight. And I was honored to be a participant.  Below is a transcript of my remarks:

“Hello.  My name is Linnea Duff.  Seven weeks ago I accompanied my son Peter on a school field trip to the summit of Mt. Cardigan.  On the descent, I slipped and broke my ankle in three places, earning a ride down with a search and rescue team.  An unremarkable occurrence in New Hampshire’s White Mountains–except for one thing.  The fact that I was on the mountain in the first place.  You see, I have advanced lung cancer.

I was first diagnosed with stage IB non small cell lung cancer in April of 2005.  It was a surprising diagnosis, as I was only 45 years old and had never smoked.  Two weeks after my diagnosis, I had a lower left lobectomy at Massachusetts General Hospital.  As I was recovering from surgery, I was introduced to my oncologist, Dr. Tom Lynch.  Because I was a young, female, never-smoker, he was enthusiastic about the likelihood that I might have an EGFR mutation and that I could qualify for a targeted therapy.  Disappointingly, I did not.

I was then given four courses of chemotherapy:  cisplatin and taxotere.  In spite of the surgery and adjuvant chemo, my cancer proved persistant, as first one and then many nodules appeared.  Two weeks before our daughter’s wedding, in July of 2008, metastic lung cancer was confirmed and I was restaged to IV.

At this time, Dr. Lynch suggested that we submit a tumor sample for more genetic testing.  I also began a course of tarceva.  After two months it was clear that the tarceva was ineffective, but there was some good news:  I had an ALK mutation. Tom now presented me with four options: continue the tarceva, return to traditional platinum chemo, do nothing, or consider enrolling in a phase I clinical trial that targeted ALK mutations.  To me, the choice was obvious. Though not risk free, the clinical trial offered something the other options did not:  a sliver of hope.

As we anxiously awaited my acceptance into the trial, I began an online correspondance with a young man who had been on trial for several months. Before long we were speaking on the phone and last year, at this function, I met him.  His name was Kevin Brumett, and with his courage and unfailing optimism, he became my lighthouse:  my beacon of hope.  To my great sorrow, he is no longer with us, but I will never forget his generosity and his pioneering spirit.

On October 1st, 2008, I received my lead-in dose of PF-02341066.  Within days, the symptoms of my lung cancer began to recede.  At seven weeks, my CT scans confirmed the miraculous:  almost complete resolution.  I have been on trial for thirteen months now.  Dr. Alice Shaw is now my oncologist and Tom Lynch is Director of The Yale Cancer Center.  My scans remain stable, and I am well; well enough to climb mountains.

In three weeks, on Thanksgiving Day, surrounded by family, I will achieve a milestone I once thought unreachable.  I will turn fifty.

In closing, I would like to offer thanks to all of you who have participated in and supported the innovative research that is identifying and producing targeted therapies.  I believe they are the path to a brighter, more hopeful and more humane future in the treatment of lung cancer.  To quote Lin Yutang:  “Hope is like a road in the country.  There was never a road, but when many peope walk on it, the road comes into existence.”

Thank you.”tn

My friend Greg, another lung cancer survivor, and his wife Janet were at the vigil and he took the little photo of me at the  podium with his cell phone.  I must also add that Jemesii said Peter nailed his role of the Big Bad Wolf in the school play, and I didn’t flub any of my lines either.

Thanks to Diane Legg and all the others who made such a special evening possible.  Events such as this will surely raise awareness of our “invisible” disease, lung cancer.

The (positive) power of the media

L1010275At dusk the past two days, the moon has risen just over the lake, turning the water a shimmery silver.  When I have awakened in the middle of the night , it has been to a world transformed:  moonlight has bleached most everything a bluish white except for what it cannot reach, and that is in deep shadow.

This morning the ground was covered in hoar frost, and the lakes we passed on the way to Pete’s bus stop had the sluggish appearance of mercury.  Frosty vapor rose from the surface; it was simply exquisite.  When I returned home I grabbed my camera and snapped this shot of the leaves rimmed in frost.

Yesterday I drove to Boston for my trial date.  Everything except for the commute is now an abbreviated version of its former self.  My labs and my visit with Dr. Shaw take place in the thoracic oncology wing, and I visit infusion only to be dosed and to pick up a month’s worth of PF-02341066.  All of this is indicative of progress, but it also means less interaction with Marguerite, Sarah and Jose (and no Irene!).  I miss our more extended visits, but each brief reunion feels as if I am greeting dear friends–which is the direction in which these relationships have developed.

Alice still devotes as much time to our appointments as before; she is an extraordinary doctor in this regard.  Yesterday we reviewed the scans I had done almost two weeks hence.  I had been just a wee bit anxious, as it had been necessary to take a four day holiday from the drug, and I had not done that before.  My lungs looked great; everything is stable.  I am hugely relieved.

There is more good news.  ABC was in the house, filming a patient for a report that will air later in the week.  This gentleman had been watching television on June 2nd when the segment on personalized medicine was shown:  he is a young, never-smoker with advanced NSCLC that had not been responding to previous treatments.  Like me, he did not have the EGFR mutation.  When he heard my story and saw the image of my lungs, he was struck by the similarities to his own situation.  Although he lives some distance from Boston, he contacted Dr. Shaw and had his tumor tested for the ALK mutation.  The test was positive, and he started almost immediately on the PF-002341066 trial.  He too has had a fantastic response, and yesterday I had the pleasure of meeting him.  He looks fabulous and he said he feels great as well.

I have also been in close contact with another young, never-smoker who is enrolled in the Korean cohort of the trial.  She also was tested for the ALK-mutation after her sister saw the ABC report and contacted Dr. Shaw.  She too has had a very postive response.

This is all so exciting to me on several levels.  First, any good news from others in this battle is cause for celebration.  Secondly, to actually witness the positive impact of a newscast in which I was a participant.  All too often news is bad news, and we forget that media plays a very important role in the dissemination of information.  And it generally has a ripple effect:  after this new story airs on ABC World News, even more people will become aware of what could potentially be a life-saving treatment for them.

Finally, there is the even bigger picture.  Because I had (and a number of others as well) a positive response to PF-02341066 so early in the trial, there was always the possibility that it was a fluke.  As the trial continues, and a greater number of participants have positive responses, it is looking more like a trend.  I really believe that we are on the leading edge of some big breakthroughs in the study and treatment of lung cancer. November is Lung Cancer Awareness Month, and one of messages that advocates are trying to get across is the need for more funding to be earmarked for lung cancer research.  As one of a growing number of individuals who has personally benefitted from innovative research, I can testify to the validity of this call.  Let’s hope that the individuals and the organizations who can make this happen are listening.