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newsletter for advocates. As the leaves are changing here in Philadelphia,
so continually are things within our department, including the structure of the
newsletter. We wrapped up an excellent Scientist<->Survivor Program at the
Science of Cancer Health Disparities Conference in Miami, FL at the begin-
ning of October. But just as things looked to be winding down, we’ve already
begun gearing up for the SSP at the 2011 AACR 102nd Annual Meeting.
Applications are now available online: apply today!
CR magazine published their Fall Issue, with a special feature titled Home-
less With Cancer, written by one of our very own advocates, Cynthia Ryan.
Be sure to read the story, and check the Survivor & Patient Advocacy website
for an upcoming dialogue between two advocates on cancer and homeless-
ness. This issue of CR also includes a Q&A with Jai Pausch, the wife of
Randy Pausch, whose ‘Last Lecture’ video on the importance of living life to
the fullest went viral shortly before his death from pancreatic cancer in 2008.
Jai is now a passionate advocate for pancreatic cancer—she talks about life
after Randy in a recent CR podcast, A New Life. As November is Pancreatic
Cancer Awareness Month, as well as National Family Caregiver Month, we
decided to spotlight pancreatic cancer caregivers in this month’s awareness.
Three volunteers from the Pancreatic Cancer Awareness Network were gra-
cious enough to comment on their experience as a caregiver to a pancreatic
cancer patient in their family.
November is also nationally recognized as Lung Cancer Awareness Month,
and we’ve included many links to articles and resources targeted toward ad-
vocates on both lung and pancreatic cancer. As always, check out the events november
:: features ::
section for ways to get involved in your communty. And of course, keep the
feedback coming to advocacy@aacr.org on how to make awareness even
better for the next issue.
Best,
lung cancer and
The Survivor & Patient Advocacy Team
pancreatic cancer
AACR in the News
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:: upcoming events ::
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November 10: Understanding Pancreatic Cancer Nov. 6: Mastery of Myeloma Course
(GXFDWLRQDO/HFWXUHV Nov 7-10: Frontiers in Cancer Prevention Conference
November 12: Facing Pancreatic Cancer Together at Nov 9-13: Chemotherapy Foundation Symposium
Froedtert & The Medical College of Wisconsin, Clinical Nov. 11: Community Updates in Oncology 2010:
Cancer Center A Focus on Head and Neck Cancers
November 13: PANCAN’s Pancreatic Cancer Awareness Nov. 11-13: Multidisciplinary Update in Breast Diseases
Day in New York, NY Nov. 11-14: School of Breast Oncology
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tional Lectures: Nashville, Tennessee sium on Molecular Targets and Cancer Therapeutics
November 17: Genetics of Pancreatic Cancer Lecture & Nov. 17-18: ICC Regional Symposia on Minorities, the
Discussion at Gilda’s Club Medically Underserved & Cancer
November 18: Health Chat-Be Pancreatic Smart Nov. 17-18: 2010 National Colorectal Cancer Round
Table (NCCRT) Annual Meeting
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BRCA mutations in men: Update and Future Directions
Nov. 20: Ovarian Cancer Survivors Course
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Nov. 20: Conversations about Colorectal Cancer
Nov. 9: The Thoracic Oncology Department at
Regional Seminar
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Nov. 30-Dec. 3: Tumor Immunology: Basic and Clinical
Awareness Month
Advances
Nov. 9: Sixth Annual Lung Cancer Symposium
Nov. 16: NCCN Webinar: Treatment Strategies for
Mesothelioma
And always, be informed of ways to exert your advocacy.
Know the organizational priorities of the organizations you
support. A great example of such transparency can be
found in the New Directions Factsheet from the Lung Can-
cer Alliance.
Stay in the know of lung cancer legislative priorities, and
take a moment to sign a petition to push along pending leg-
islation. If you’re interested in taking your advocacy a step Blogs are inspirational resources for survivor advocates
further, here’s a great resource for contacting the media. and patients alike. LUNGevity has a blog full of survivor
stories that are sure to empower any reader.
Word of mouth is crucial to spreading awareness, so post
these public service announcements to Facebook, tweet And if that wasn’t enough, here’s a succinct list of
them on Twitter, or any other form of social media you may Seven Ways to Support Lung Cancer!
use.
:: spotlight on pancreatic cancer caregivers ::
Three pancreatic cancer caregivers—all of whom volunteer for the Pancreatic Cancer Action Network—share their
stories of the challenges and rewards of being a care giver. One of the deadliest cancers, pancreatic cancer survival
rates have remained stagnant—at only six percent—for the past 40 years. Survivorship remains so low because there
is still no early detection method and no effective treatment. According to PANCAN, by 2030, new diagnoses of pan-
creatic cancer are projected to rise 55 percent. While these statistics are discouraging, it is comforting to know that an
ever-growing network of pancreatic cancer caregivers and advocates exists. Todd Cohen, Colleen Kmiecik, and An-
drea Bauer all graciously contributed their voices on caregiving to the Survivor & Patient Advocacy department (SPA).
SPA: How did you come to adopt your role as a caregiver?
Todd: Fortunately, I wasn’t the only caregiver for my father, who was diagnosed with pancreatic cancer in 2001. My-
mother, brother, sister and sister-in-law were always willing to lend a hand and as they say, “The more the merrier.” It
always helps when you have a team of people to give support and share the responsibilities (TEAM = “Together Every-
one Achieves More”). When I learned of the uphill battle that he was facing, I knew I had to be there for him whenever
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day off to travel with him to his chemotherapy visits or the hospital for any additional procedures he might have needed.
It was important for me to spend as much time with my father as possible and constantly remain upbeat and optimistic
no matter what obstacles were presented.
SPA: With such a low survival rate for pancreatic cancer patients, what is the greatest challenge to providing optimistic
care?
Andrea: The greatest challenge to providing optimistic care is not to be caught up in the statistics and to focus on each
day that we were given with my mother. My mother lived her life as a “glass half full” type of person and refused to give
into the notion that just because the survival rate was low, she was being given no chance for survival. We spent every
day living life as though nothing had changed, despite all the doctors’ appointments, treatments, and bad news. It is
important to focus on what you can control;; providing comfort and care to your loved one, and making the best decisions
for their course of treatment.
SPA: What do you feel is the greatest reward to being a pancreatic cancer caregiver?
Colleen: While caring for my mom was one of the greatest challenges in my life, it was also one of my greatest accom-
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by her family, who was providing the most loving care possible. Even though my mom suffered throughout her illness, it
is comforting to know that her life ended as peacefully as possible.
SPA: Has being a caregiver led you toward considering yourself to be an advocate for pancreatic cancer as well? Why
or why not?
Colleen: Absolutely! For several reasons: 1) It is a way to carry on my mom’s memory. I do this for her as much as I do it
for others who have been, or will be, diagnosed with pancreatic cancer. It’s my way of saying, “Mom, I haven’t forgotten
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ers don’t have to endure the same thing. It’s a horrible disease and no one deserves it.
SPA: Could you recommend any particular resources you found helpful when you began care giving that you’d want to
pass on to fellow cancer caregivers?
Todd: The Survivor and Caregiver network of PANCAN puts patients and their families in touch with people who can
share their experiences, ask questions and offer support. All of our services are free of charge and patient information is
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main positive. Miracles do happen and if you can keep thinking that you’re going to beat the odds and defeat pancreatic
cancer, you’re just another in the line of people who continue to create hope for others in beating this insidious disease
and, to borrow a line from the Stand Up To Cancer campaign, “making cancer history.”
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nosis and grasping what has just been handed to you. In addition, the Pancreatic Cancer Action Network (www.pancan.
org) is an amazing resource for anyone affected by Pancreatic Cancer. The Patient and Liaison Services (PALS) is a
comprehensive, free, information service for pancreatic cancer patients, their families, and health professionals.
:: resources for pancreatic cancer advocates ::
A recent Q&A in the Fall Issue of CR magazine featured Jai Pausch, whose husband, Randy Pausch, died of
Pancreatic Cancer. Randy is known for his work as a professor at Carnegie Mellon, when his ‘Last Lecture’
in September 2007 went viral on YouTube. As NCI only allots two percent of their funding toward pancreatic
cancer research, Jai, and many others who have been affected by pancreatic cancer. An outspoken advocate
for increasing funding and awareness funding for pancreatic cancer research, Jai continues to advocate on her
husband’s behalf:
How can YOU get involved as an advocate for pancreatic cancer?
Start by focusing on the top legislative and funding priorities by:
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funding to protect on-going research and provide new research opportunities for pancreatic cancer
Also, here is a comprehensive info sheet to distribute: Pancreatic Cancer Facts 2010