An Unstoppable Force
Lauren knew that we all have a common, overarching goal….We all want to live. More importantly, we all want each other to live. Scientists offer science. People with similar presentations compare notes. And always with great affection and love. What may have started as a simple support group is becoming an unstoppable force, populated with more extraordinary people.~Jim Chapdelaine
Lauren Skop Ryan created a Angiosarcoma Support Facebook Group when she was diagnosed with angiosarcoma (AS) in April 2009. In her words, “I was alone and couldn’t find anyone like me. I opened this group with hopes that people will find it and they did. …Our online group turned into a family. We share stories and experiences to help one another. We are here for each other for our hurdles through our journey’s. The love and support is beyond amazing. WE WILL PREVAIL!”
Angiosarcoma is a “soft tissue” cancer of the endothelial layer of blood vessels. So it can occur in any organ of the body. Normally, the endothelial layer of blood vessels signal new blood vessels to form in a process called angiogenesis. When this process is out of control, masses of blood vessel tumors are formed–angiosarcomas.
Out of control angiogenesis is the tool other solid cancers use to link to the blood stream and grow out of control.
Unlike many solid tumors, angiosarcoma is in constant contact with blood, which may explain why it frequently metastasizes. The five year overall survival rates are less than 30% with recurrences happening after the 5 year mark.
“[Getting a d]iagnosis took about 4 months. “The doctor called me on my cell phone. I tossed the phone, hopped out of my car and broke down in tears. Couldn’t believe it, total shock. My husband was in the car with me, he took the phone and talked to the oncologist while I fell apart. It’s like time stands still. Because so little is known, we thought I would be dead in 6 months.”
“[I said to my first oncologist] ‘I can’t die, I have small children,’ my oncologist said, ‘There’ll be someone there to raise your children.’ I’m currently NED, but hyper-vigilant. Any bruise, cough, ache and pain could be a recurrence. I know too many patients who have late recurrences to ever feel safe.” ***
Corrie Painter, PhD is a scientist. Her work has included studies in immunotherapy and research on cardiovascular disease precursors. A University of Massachusetts Medical School Graduate in Biochemistry, she has won numerous awards–the 2012 recipient of the Irvington postdoctoral fellowship through the Cancer Research Institute, $165,500 over three years; the 2013 recipient of the Courage Award from the Sarcoma Foundation of America; and the 2011 recipient of the Chancellor’s award at U Mass Medical School in recognition of academic excellence, influential leadership and strong community service–just to name a few.
“I was diagnosed, after 9 doctors, with angiosarcoma (AS) inside my lower lip in 1976. Very aggressive with visible growth daily. I had 1/3 lip resection, Cytoxin and Adriamiacin for a year through 1977.
Jim Chapdelaine is an award winning musician with 13 Emmy awards and two Grammy nominations as a record producer. You’ve heard his work in jingles and soundtracks for Dateline, The Army National Guard and even Bullfrog Sunscreen. He gigs and records with Big Al Anderson, Freedy Johnston, Chris Collingwood (Fountains of Wayne), The Pousette Dart Band and The Shinolas. His current work includes mixing and creating music for 2 national PBS music series “Infinity Hall Live” and “The Kate.”
“In 1978 I had moved and was on the road. I was seeing a new Ear Nose and Throat doctor. He dismissed my complaints about my nose and gave me Blistex . Doesn’t work! This went on for 6 months as the second tumor grew. I found a new doctor who had me in the OR the next day. A week later, he rebuilt my nose with my ear. Followed by radiation, daily for 8 weeks at Tufts.”
“In 1979 I insisted they remove a cyst from my tongue. Angiosarcoma again. They removed to clean margins. No further treatment. I have a lisp! I was told I had a year to get my affairs in order..I wandered from doctor to doctor in a state of high anxiety for years. It took me 30 years to speak with another AS person. It’s crazy rare. Doctors would tell me there was a misprint in my records. That I was impossible…sort of a freak!”
The Catalyst For Meeting: Bridging Barriers Online
Lauren brought these two together on Facebook. According to Jim, the Angiosarcoma Support Facebook group “is an amazing community that has changed how patient-directed medicine will be done.” Jim pauses. “Thank you Lauren Skop Ryan.”
He continues, “It was like finding a lost tribe. I was in shock. I’ve been in the group for 3 years and see people’s lives saved or extended…for me – [being involved is like] paying it forward. I was wandering in the desert for 30 years.”
“When new patients are diagnosed we get them to the right oncologists like Dr. Vinod Ravi, in M.D. Anderson Cancer Center in Houston who has become an expert in angiosarcoma,” Corrie relates. In other words, this group of patients do everything in their power to save each other.
Sadly, Lauren died June 19, 2014.
Jim wrote, “[Lauren].. was, by all accounts, metrics and time spent, an extraordinary person. We read about them or see them in movies. She was an ordinary person whose life was turned upside down, in the most adversarial way, by Angiosarcoma, and rather than go about her business quietly, became extraordinary. Adversity can do that…”
“Lauren was a force of nature who didn’t care if the answer was no. She was going to squeeze a yes from the universe,” Corrie says. Because of that indomitable energy, in 2010, from the Facebook group, Lauren decided to fundraise. Corrie remembers, “I met Lauren shortly after she filed for 501c3 status and we partnered. She did the business, I did the science. Our goal: year 1 raise 10K, year 2 raise 50K year 3 put out 1 grant.” They have raised much, much more. ” “We are in year 5 and fund 5 labs, surpassed expectations!”
“The goal of our organization is to foster a collaborative atmosphere between the researchers that we fund in order to generate data and reagents that can be shared by the sarcoma community as a whole.”~Corrie Painter
Patient Engagement In Action: Angiosarcoma Awareness
Presently Corrie, in addition to being the Vice President and Chief Scientific Officer for Angiosarcoma Awareness, works at the Broad Institute, a collaborative of MIT and Harvard, as Associate Director of Operations and Scientific Outreach. In that capacity she is instrumental in engaging patients in genomic research. Genomic research is the bedrock of personalized medicine.
In a blog post and #BCSM tweetchat conducted on June 22, 2015, Corrie and collaborator Nikhil Wagle, MD, described an innovative project called the #MBCproject. This project, and others in the future, are about mapping the genes of cancers and sharing data collaboratively.
Stay tuned for Part 2