Tag Archives: ABC World News

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.

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.

Personalized Cancer Care on ABC World News

In late May, I got a phone call asking if I would appear in a report being filmed for ABC World News. This coincided with the annual ASCO (American Society of Clinical Oncology) meeting in Orlando, and the focus of this meeting was personalized care. A producer for ABC had seen a story about my treatment at MGH that was published in the Boston Globe on March 3rd, 2009  and felt that it was a good illustration of this approach. Over a period of two days, a crew filmed and interviewed Dr. Leif Ellison, Dr. Alice Shaw (my oncologist) and myself. The piece appeared on the ABC World News with Charles Gibson on June 2, 2009.
My brother John and my sister Bink were visiting us the night it aired. Seeing the before and after CT scans of my lungs, broadcast around the world no less, was pretty amazing.
It generated a lot of excitement among other lung cancer patients as well, with the hospital receiving over 2000 phone calls. Only a small number of these callers would fit the genetic profile required to enroll in the PF-02341066 trial and therefore, many were disappointed. That “now you see it, now you don’t” image of my cancer was something that so many people were looking for.
There are two things I should clarify. The first is that only approximately 4% of lung cancer (NSCLC) patients test positive for the ALK mutation. Given how many individuals are diagnosed with lung cancer (219,000 in just the United States annually), this still represents a significant number of people. For those who don’t have the ALK mutation, there are therapies that target EGFR (10% of people with NSCLC)) and K-RAS mutations (15%). But I feel the most important thing to realize is that this is the beginning, the tip of the iceberg if you will, of a radically new approach to treating lung cancer and, cancer in general. As researchers continue to explore the genetic underpinnings of cancer, more targeted therapies will emerge.  The hope is that some of these treatments will prove  to be not only effective, but also that the side effects will be much more manageable than traditional chemotherapies. Quality of life is every bit as important as quantity of life.

The second point is that the treatment I am receiving is not a “cure” for cancer. My cancer is being managed or controlled.  This is still absolutely amazing.  I have terminal lung cancer, and yet I continue to live.  And I believe I will, for at least several more years, something I couldn’t have said prior to starting this treatment.

And now a story about what we are all really looking for in life.  My daughter was googling my name and came up with a blog post from July 12. Sadly, Farrah Fawcett had just passed away after a protracted battle with anal cancer. The person writing the blog had seen the ABC news piece and wrote the following:

“Here’s the link to the ABC News Video on YouTube on their “Personalized Cancer Care” report. It shows the promise of smart drug chemotherapy and genetic profiling. The woman in the video who finds her miracle cure is Linnea Duff. I was hoping that Farrah would be the next Linnea Duff.”

Well. When I started college in 1977 the poster of Farrah and her thousand watt smile and her red speedo was on the wall of more dorm rooms than I could count. Never would I have thought that some day we would be mentioned in the same sentence. Unbelievable that now I possessed something that was unattainable for Farrah: more time.