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.

6 responses to “The (positive) power of the media

  1. Exquisite your description of nature, I bet you have as many words for frost and snow as an inuit.

    I am very happy with your great scan. In a prior entry my wife perceived anxiety and blame for a lifestyle that made you more vulnerable. Don’t worry, you didn’t smoke like a BBQ. Did you notice the funny entries from God’s Inbox in possible related posts automatically added to your blog, like Momma’s lung cancer, yeah she smoked like a BBQ but ple…

    Amazing encouraging news more people doing very well in the trial. I also hope that organizations in Canada are watching this events with more eyes than Pete’s mask.

  2. Thanks friend. I hope Canada is paying attention as well–a lot of good people live there :> Linnea

  3. I wonder how many people in the world saw you on the ABC report, got tested for the ALK mutation and joined in the trial.

    I once worked in the field of TV news production and became disappointed after a while with the sensationalism and not-so-truthful aspect of the news making, and I left the job. Your story, however, made me realize that the media can be used as a powerful tool to do a good deed such as saving lives. I want to thank everyone involved in the production of the ABC report of personalized cancer care and especially you, who agreed to talk in front of the camera. (as I know how nerve-wrecking it must have been!)

    And, I’m so glad to hear that your scan result was great after all those ordeals you had.

  4. Thanks Yuki. It would be great to think that even a handful of people have benefitted–the gentleman at the hospital said he knew of 10 people on trial after seeing the report. As our stories spread, let us hope that more and more people are given another chance. Love, Linnea

  5. I heard you speak last night at the Shine a Light event and was very inspired by your courage and your message. I hope for all the best for you and continued success on the trial drug. Thanks for speaking out and encouraging awareness of this deadly disease.

    • I’m glad you attended Megan. I felt it was a very worthwhile event and I was so glad to see so many people in attendance. And thanks for the kind comment, it means a lot to me. Linnea

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