Shine a Light on Lung Cancer

Thursday 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.”

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.