#LCSM, camidge, cancer, CANCER HUMOR LAUGHTER TARCEVA DIVAS DUDES, cancer laughter, celia ruiz tomlinson, clinical trials, Clovis Oncology, CO-1686, FDA, metformin, ODAC, progression, rociletinib, T790M, tarceva, Toastmasters
Okay, folks! Let’s prepare for the water works. Get the tissues and handkerchiefs out. A tearjerker of a speech is just ahead.
First, for the speech writing class, here’s a small background. My handler emailed me the following outline for the speech:
You name and age
· A brief sentence to share that Clovis support your travel – “Clovis Oncology supported my travel here today.”
· A few sentences about yourself – your family, what you do for a living, connections with your community, etc. – all to give a picture of your life before your diagnosis
· When you were diagnosed and your diagnosis – details you feel comfortable sharing about the severity of your diagnosis
· A few sentences about what treatments you received prior to rociletinib and the success or failures of those treatments
· Your experience with rociletinib and what adjustments and decisions you made with your physician – adjusting dose to manage glucose levels, any issues with rash but stayed on product as it was manageable
· Your life since rociletinib – what you have returned to doing
· Why you traveled to be at the meeting to share your story, what you want the committee to remember about your story as they consider their decision – e.g., The issue of resistance and need for additional therapies for patients with T790M mutation
I thought, OMG, how am I going to squeeze all that information in a written six-minute speech, actually shorter than that because I’d have to gasp for air after a comma, a longer gasp after a period? That’s what my grade school teacher had drilled in my head. And since we’re talking about a senior babe whose age encompasses a huge chunk of a century, how will I condense an autobiography the size of War and Peace into a 4-1/2 minute piece of literature and still keep the essence of the story? Such a monumental task! Enter the caped Inner Genius to whom nothing is insurmountable. Voila! The speech:
My name is Celia Ruiz Tomlinson. I am a 75-year-old lung cancer patient.
First of all, I thank the Board for allowing me to share my experience with lung cancer, and Clovis Oncology for making my trip possible.
I am a retired engineer/entrepreneur, a published author and a professional motivational speaker.
Growing up in a Manila slum awash with rotting trash and human waste, I transcended numbing poverty and became a civil engineer in the mid 1960’s when female engineers were unheard of. Buoyed by that success, I came to the United States in 1968 legally, alone with only $300 and my engineer’s diploma. To my rude awakening, the American engineers confronted me with fierce resistance. Through sheer tenacity, I gained acceptance.
In 1983 I founded an engineering company with $2000 from my own pocket. As its President and CEO, I grew the firm and received national entrepreneurial leadership awards. Twenty-five years later, in 2008, I sold the business and retired.
Four years into retirement, in the summer of 2012, I had a cough that didn’t seem to go away. A visit to my doctor led to an image of a golf-ball-sized tumor at the bottom of my left lung and tiny nodules too many to count in both lungs. Biopsy followed. The diagnosis: Non-small cell lung cancer, Stage Four. Prognosis: 8 months to live – a year at most.
True to character, I faced the dire prognosis with aplomb. But spunk alone can’t fight cancer. Drugs are needed. At that time, FDA had just approved Tarceva for first-line treatment of my type of cancer. My oncologist put me on Tarceva 150 milligrams daily. No immediate side effects for one week. On the eighth day, rash blanketed my face and chest. The dosage was cut in half and the rash went away. After 100 days on Tarceva, the main tumor shrank 80%. Subsequent CTscans showed stability. My quality of life was good.
After 20 months on Tarceva, my oncologist suspected resistance and suggested that I participate in the rociletinib clinical trials. Having qualified, I was accepted.
I took 1500 milligrams of rociletinib daily. For four months, no side effects. My quality of life was great. On the fifth month my blood sugar elevated. My oncologists and I worked with Metformin to control the hyperglycemia. Later we reduced the rociletinib dosage to 1000 milligrams. One day I went on a 3-day drug vacation. When I resumed medication, the hyperglycemia mysteriously disappeared.
I have been on rociletinib now for two years, stable, with zero side effects the last twelve months. My awesome quality of life allows me to blog, inform and inspire other cancer patients.
Today is a far cry from that summer day of 2012 when the first oncologist sort of declared me “dead woman walking.” I implore the Board to please remember my story when deciding on the fate of rociletinib. A cancer drug affects each patient differently. It has been very good to me and other patients. Therefore having more approved drugs is better than having less.
It was the quietest event in my platform speaking history. There was no laughter, no applause, nothing but the sound of my voice through the microphone and eerie silence. It was a somber occasion, a plea for approval of a cancer drug.
Where’s the tearjerker? Just before blog post time, reliable sources informed me that the drug sponsor made a business decision to discontinue the pursuit of FDA approval of rociletinib, stop recruitment of participants for the trials, and focus its resources on the ongoing development of another more promising drug. Rociletinib will never see commercialization. The cancer medicine brand “Poksceva” (that’s what my blog buddies and I named it!) will never be an option for non-small cell cancer patients with T790M mutation.
What about me?! I asked in horror. At this point, this is all about me. Your latest CTscans and blood work are still good. You’ll continue to be given the pills, my contact assured me. In other words, the program will be shut down through attrition. The pills contained in a silo somewhere in the Rockies are there for me. Henceforth, it’s me and my CO-1686 against the world. Okay, that’s just a touch of drama. I’m sure there are others out there in my situation.
Let’s conclude the post on an upbeat note. During the speech delivery, there were no stumbles. The word “rociletinib” tumbled from my lips perfectly enunciated at every mention, I toed the earnest line, and finished the speech under the allotted time. The official timer, the noose man in the ceiling, never had a chance. A Blue Ribbon performance at Toastmasters Club! It’s time for a self-award. Let me retrieve the calligraphy pen from the bequest box. Now, that definitely calls for a celebration.
Happy dance, Feisty Heifer!