C3:Momentum
LEGISLATIVE BEAT
VOLUME 3, ISSUE 4 Winning the fight better
Moving towards
Keeping Cool with Cancer
During the Summer Months
by Kim Ryan
You don’t need to skip time on the beach
during treatment.
Summer has arrived! Whether
you are currently undergoing
treatment for colorectal cancer,
or have just finished your
treatment, managing the side
effect of the summer heat can be
challenging. Treatments such as
Erbitux® (cetuximab), Eloxatin®
(oxaliplatin), Camptosar ®
(irinotecan), 5-FU and Xeloda®
(capecitabine) can all manifest
certain side effects that are
important to pay attention to
during the summer months. High
temperatures, busy schedules, and
1225 King Street, 2nd Floor, Alexandria, VA 22314
(703) 548-1225 • www.FightColorectalCancer.org
against colorectal
care cancer
and a cure SUMMER 2008
vacation plans may increase the
intensity of these side effects.
Sun caution. Colorectal cancer
therapies (including both
chemotherapy and monoclonal
antibodies) can increase your skin’s
sensitivity to sunlight, so protecting
yourself from the sun during C3 Board Chair Nancy Roach with Rep.
treatment is very important. Skin Greg Walden (R-OR-2) at Call-on Congress
rash is a common side effect with 2008. For more, see page 3.
EGFR inhibitors like Erbitux and
Vectibix™ (panitumumab) so sun
protection is critical during these
therapies because sun can make
IN THIS ISSUE
the rash worse. FROM
THE PRESIDENT’S DESK.................. 2
Also, if you are undergoing
radiation treatment, it is
ON THE HILL
particularly important to avoid
C3 “Marches” on Capitol Hill................ 3
ultraviolet (UV) rays. Melanin
protects the skin by absorbing UV
radiation from the sun. However, SPOTLIGHT ON RESEARCH
following radiation therapy, the The Lisa Fund: Our First Research
Grant!............................................................4
skin’s ability to protect itself from
UV rays is decreased as a result of
the destruction of skin cells called LEGISLATIVE BEAT
melanocytes during radiation. So As Federal Funding for Cancer is Cut,
avoid direct sunlight whenever Researchers Struggle.............................. 5
possible during radiation treatment.
DUSTY’S
RECIPE FOR ACTION.......................... 6
continued on page 7

Board of Directors
Nancy Roach, Board Chair
Alan Balch, PhD, Vice Chair
Greg Crafts, Treasurer
Robert Erwin, Board Secretary
Carlea Bauman, President
Steven Depp, Ph.D.
Andrew Giusti, Ph.D.
Medical Review Network
Mace Rothenberg, MD (Chair)
Vanderbilt University Medical Center
Nancy Baxter, MD, FRCSC
University of Toronto
Al B. Benson III, MD, FACP
Northwestern University
Richard Goldberg, MD
University of North Carolina
Axel Grothey, MD
Mayo Clinic College of Medicine
Heinz-Joseph Lenz, MD, FACP
University of Southern California
John Marshall, MD
Georgetown University Medical Center
Howard McLeod, PharmD
University of North Carolina
Neal Meropol, MD
Fox Chase Cancer Center
Edith Mitchell, MD
Thomas Jefferson University
Daniel Sargent, PhD
Mayo Clinic College of Medicine
Joel Tepper, MD
University of North Carolina
FROM THE DIRECTOR’S
DESK
Medical Beat
MARK YOUR
CALENDAR
C3 is heading to the CALENDAR
American Society of Clinical
Oncology’s Annual Meeting
in Chicago, IL
May 30-June 3.
Kate Murphy, C3’s Director
of Research Communication,
will be blogging about the
latest news in colorectal
cancer research and
treatment.
Don’t miss a word of
it. Check out www.
FightColorectalCancer.org
beginning June 2.
2 www.FightColorectalCancer.org
FROM THE PRESIDENT’S DESK
All Hands, Brace for
Impact on Funding
Carlea Bauman
President
As a nervous flyer, I always look to
the flight attendants when we hit
mid-flight turbulence to determine
how concerned I should be. They
never look nervous, no matter how
bumpy the ride gets. I must admit,
it calms me.
Cancer research is in the midst
of its own turbulence. Federal
funding has been on the downslide
for five years. Cancer groups like
C3 started getting nervous years we invited Dr. Richard Goldberg,
ago, but when we looked to the a researcher from North Carolina,
researchers for their reaction, they to speak to our advocates about
pretty much kept their cool. how five years of cancer research
funding cuts are impacting his
Well, no longer. day-to-day work. His remarks were
so compelling that we asked him
If cancer research funding is a to write about it for this issue of
bumpy airline ride, the researchers Momentum (page 5).
are the flight attendants telling us
to put on our oxygen masks. As passengers all we can do is grab
On the Hill the life-preservers stored under
About a year ago, I spoke with a our seats but, as advocates, we can
researcher who was so angry about take action! C3 has taken action
the science that was not being done by speaking out about the need
due to budget cuts that I thought for increased research funding –
he was
Dusty’sgoing
Recipe for to burst into tears. Or
Action and by funding research ourselves
throw a chair. (page 4).
If cancer research funding Our advocates are also hard
is a bumpy airline ride, the at work. In addition to Call-on
Congress, they spoke out in
researchers are the flight
support of colorectal cancer
attendants telling us to put on legislation that is currently sitting
our oxygen masks. in Congress. Thousands of you
participated in the Congressional
Butt-In on March 19th (page 3),
And he’s not the only researcher a one-day phone blitz to Capitol
speaking out. At C3’s Call-on
Congress (see page 3) in March, continued on page 7
 ON THE HILL BEAT
LEGISLATIVE
C3 “Marches” on Capitol Hill
by Joe Arite
Ryan McKee, Legislative Director for Rep.
Vito Fossella (R-NY-13), prepares advocates
for their meetings.
C3 and its advocates were all over
Capitol Hill during Colorectal
Cancer Awareness Month (or, as
it is also known: March). The 2nd
Annual C3 Call-on Congress took
place from March 9–12.
Colorectal cancer advocates from
the four corners of the country
came together in Washington, DC
to take their message to Capitol
Hill. Many came in as public policy
novices but left as experts. They
were professionally trained in
the legislative process, and were
briefed on specific colorectal
cancer legislation in Congress.
The next day, they were off to
Capitol Hill to sit down face to face
with their Members of Congress.
The advocates educated their
Members on legislation that would
increase access to screenings and
the critical need for higher funding
levels at the National Cancer
Institute (NCI).
Call-on Congress participants
included colorectal cancer
C3 Momentum Summer 2008
C3 thanks our Grassroots Steering Committee for helping us make Call-on Congress a
success. From left: Marilia Sardinha, Erika Hanson Brown, Suzanne Lindley, Dusty Weaver.
survivors, families of patients, and
those who lost loved ones to the
disease. Many had never been to
Washington, DC before. They were
driven to action by their need to
make the world better for people
fighting colorectal cancer.
“Call-on Congress was really
special for me; it was a labor of
love,” said Patti Hollenback, a C3
advocate from Pennsylvania. “My
connection to colorectal cancer
Pennsylvania advocates Verna Cox (left)
is my late husband, Harry. I went and Patti Hollenback pose on Capitol Hill
to Washington for him and all our with Joe Arite.
angels and friends we have met
along the way.” Over 325 Congressional offices
were contacted by C3 advocates
making one simple request: support
colorectal cancer screening
legislation and cover our butts!
Want to join us at our 2009 Call-
on Congress? Log onto www.
FightColorectalCancer.org/
But the advocates didn’t stop there. ConC2009.
One week later on, March 19th,
nearly 2000 people participated C3 would like to thank Genentech
in C3’s Congressional Butt-In, a BioOncology for supporting the
one-day phone blitz to Capitol Hill. Congressional Butt-In.
3
 SPOTLIGHT ON RESEARCH
The Lisa Fund: Our First Research Grant!
by Carlea Bauman
Dr. Yaguang Xi has been awarded
C3’s first Lisa Fund Research
Fellows Grant for his project,
“MicroRNAs, novel prognostic
biomarkers in colorectal cancer.”
Dr. Xi received his medical and
PhD degrees in Beijing, China.
After working as a surgeon for
several years, he decided to focus
on research and began work on
his postdoctoral research with Dr.
Jingfang Ju at the University of
South Alabama – Mitchell Cancer
Institute. “I wanted to improve the
outcomes for my patients,” said
Dr. Xi.
The grant came through the Lisa
Fund, spearheaded by Lisa Dubow
who passed away in 2007 after
living with metastatic colorectal
cancer for a decade. “Lisa knew
that supporting young investigators
with their cutting edge ideas was
how we would find a cure for
colorectal cancer,” said Nancy
Roach, C3 Board Chair. “Lisa not
only talked about the need for
research, she went out and raised
the money needed to make it
happen.”
L isa knew that supporting young
investigators with their cutting
edge ideas was how we would
find a cure for colorectal cancer.
Dr. Xi’s grant, which was
competitively awarded through the
American Association for Cancer
Research (AACR) peer review
process, has two parts. In his prior
research, Dr. Xi looked for micro-
RNA, tiny bits of genetic material
which help regulate cellular
functions. He identified a number
4 www.FightColorectalCancer.org
Lisa Dubow
From left: AACR Past President Dr. William
Hait, Nancy Roach, Dr. Yaguang Xi, Sean
Twersky (Lisa’s son)
© 2008 AACR/Todd Buchanan
of micro-RNA which had higher
levels in colorectal cancer cells
than in normal cells.
During the first part of his grant-
sponsored research, Dr. Xi will
examine the impact high levels of
these specific micro-RNAs have
on how sensitive cancer cells
are to chemotherapy with 5-FU,
Eloxatin, and Camptosar. If cells
from tumors with high levels of
micro-RNAs don’t respond well
to these drugs, it could indicate
that reducing the amount of these
micro-RNAs in cancer cells may
increase the effectiveness of
chemotherapy, thereby identifying
a promising new method to
improve treatment for colorectal
cancer.
In the second part, Dr. Xi will look
for micro-RNAs in the tumors of
hundreds of people with stage
II or III colorectal cancer who
had a recurrence, and attempt
to determine if the presence of
specific micro-RNAs correlate with
a favorable or unfavorable patient
outcome. This study might provide
markers to identify patients who
need aggressive adjuvant treatment
after surgery to prevent recurrence.
C3 is committed to efforts to
both increase our national
spending on colorectal cancer
research, and to provide direct
support for research through the
Lisa Fund.
Although the idea of the Lisa
Fund came from Lisa herself,
hundreds of donors made the grant
a possibility. “Lisa was with us
in spirit when the first grant was
awarded, and her efforts continue
to make a difference for patients,”
said Roach.
As cancer research funds are cut,
direct funding of peer-reviewed
research by groups such as C3
is critical to future progress. C3
is committed to efforts to both
increase our national spending on
colorectal cancer research, and to
provide direct support for research
through the Lisa Fund.
C3’s vision is that someday
colorectal cancer will be no more
deadly than the common cold.
Invest in our goal by supporting
the Lisa Fund. Contact Carlea
Bauman, C3 President, at
703-548-1225 ext. 11 for more in-
formation on how you can help.
 LEGISLATIVE BEAT
As Federal Funding for Cancer is Cut,
Researchers Struggle
by Dr. Richard Goldberg, Associate Director for Clinical Research at Lineberger Comprehensive Cancer Center,
Chief of Hematology and Oncology at the University of North Carolina at Chapel Hill
Over the past five years, funding
to the National Cancer Institute
(NCI) has been cut by 15.6%, when
adjusted for inflation. These cuts
are having real consequences on
cancer research, both in the short
and, more importantly, the long
term. As a researcher studying
cures and treatments for colorectal
cancer, I know this firsthand. In
addition to my work as a physician
at the Lineberger Cancer Center
at UNC-Chapel Hill, I also oversee
gastrointestinal cancer research
for the clinical trials group “Cancer
and Leukemia Group B” (CALGB).
Here’s the bottom line: decreased
federal support for clinical
research puts us further away from
a cure and will translate directly
to more lives lost to colorectal
cancer. These cuts are being
felt by researchers all over the
country. With each round of cuts,
it becomes increasingly difficult to
do our jobs. For example, earlier
this year, I was directed by the
NCI to cut the number of patients
being studied by 10%. In order to
accomplish this, I had to halt the
start up of new clinical trials and
close existing studies. The impact
of this action is tremendous – not
only for me and my colleagues, but
for countless patients searching for
new treatment options.
Because of tightening budgets,
reimbursement from the NCI for
patients enrolled in clinical trials
is about half the cost of providing
C3 Momentum Summer 2008
Dr. Richard Goldberg speaks to advocates
at Call-on Congress: “The price we are
paying is too high.”
the required oversight. This
reimbursement is needed to make
sure that protocol is followed and
the data accurately reported. That
funding has not increased in many
years, so the resource is dwindling
with the passage of time. Cancer
centers like mine must then cover
the rest of the cost but, since they
are also dealing with falling or
flattening budget levels, this is
becoming increasingly difficult.
Oftentimes, we must turn to the
pharmaceutical industry to help
fund our studies, which comes with
a unique set of issues and potential
conflicts of interest.
Another concern: My colleagues
and I aren’t getting any younger,
but it’s getting harder and harder
to attract the best young minds
into cancer research. If you were
graduating with a doctorate degree,
bringing with you the large sums
of debt that comes from years
of schooling, would you want to
embark on a career where funding
is scarce and getting worse? I
work with many very smart, young
faculty members who cannot get
research grant funding because
the money simply is not there.
Many of the brightest minds who
could choose to spend a lifetime in
cancer research are being forced to
make other choices.
Here’s the bottom line:
decreased federal support for
clinical research puts us further
away from a cure and will
translate directly to more lives
lost to colorectal cancer. These
cuts are being felt by researchers
all over the country.
Continuing the federal investment
in cancer research will provide
returns in new discoveries, better
outcomes, and meaningful careers
for our best and brightest young
people. This is why I am happy
to support the work of C3 as it
fights for more money for cancer
research. I urge you to log on to
Advocacy.FightCRC.org and send
a message to your legislators that
cancer funding must be increased.
The price we are paying is too high
to do anything less.
5
 DUSTY’S RECIPE FOR ACTION

Advocacy is a Process, Not an Event

by Dusty Weaver
While reading an article on the
National Cancer Institute
web site, www.Cancer.gov, I came
across the following statement:
“Cancer is a process, and not an
event.” The same thing can be said
about cancer advocacy and the
passage of HR 1738, The Colorectal
Cancer Early Detection and Treatment Act.
• Log on to www.CoverYourButt.org and send an
email to your Members of Congress urging them
to support HR 1738.
• Attend public appearances that your
Representative makes back home in the district.
Steel yourself, stand up and publicly ask about
his/her support of the bill.

HR 1738 would create a program at the Centers
for Disease Control and Prevention that would
provide colorectal cancer screening for the poor,
uninsured and underinsured. A similar program
was developed for breast and cervical cancer in the
1990s, and has helped over 3 million women. Since
colorectal cancer can be prevented and/or stopped
in its tracks simply by removing polyps or by the
detection of cancer at an early stage, making access
to screening for it is one of the most important
things we can do as advocates.
C3 advocates pressed for the passage of HR 1738 in
meetings with our Members of Congress during C3’s
Call-on Congress and the Congressional Butt-In this
past March. And we know we made an impact. So
far, the bill has over 120 co-sponsors (an important
factor when determining a bill’s chances of passage)
and it enjoys bipartisan support. It’s great to see
that saving lives and saving money ISN’T a political
issue.
There is still much work that we as advocates can
do to support HR 1738.
• Write letters to the editor of your local paper
talking about HR 1738 and urging your
Representative to support the bill.
• Post articles on personal blogs or comments
on the blogs of others. Link them to www.
CoverYourButt.org.
• Talk about the bill on social networking sites
such as MySpace or Facebook (there is even a
Cover Your Butt cause on Facebook that you can
join).
Let Joe Arite, C3’s Policy and Grassroots
Manager, know about your activities and ask
him for help. You can reach him at Joe.Arite@
FightColorectalCancer.org or at 703-548-1225 ext.
12.
Advocacy is a process. All the hard work we put
into passage of HR 1738 will just make the victory
sweeter when it finally happens!

Clinical Trials as a Treatment Option

By participating in clinical trials,
you can both receive treatment
for your cancer while also helping
to develop improved options for
future patients.
Clinical trials play an important
role in developing new treatment
options for many diseases,
including colorectal cancer. During
6 www.FightColorectalCancer.org
a clinical trial, research determines
whether a new treatment is safe
and effective, while still ensuring
that patients receive at least the
current standard of care. Clinical
trials provide patients with a way
to play an active role in their own
health care, potentially gain access
to new treatments before they are
widely available, and help others by
contributing to medical research.
If you are interested in
participating in a clinical trial,
or would just like to learn about
them as a treatment option, please
contact the C3 Answer Line at
877-4CRC-111 (877-427-2111).
 C3 NOTES
From the President’s Desk
continued from page 2
Hill. Some congressional offices
received as many as 70 phone calls
from constituents urging their
Members to cover their butts. Great
work to all who joined our efforts!
Thousands of you participated
in the Congressional Butt-In on
March 19th, a one-day phone
blitz to Capitol Hill. Some
congressional offices received
as many as 70 phone calls
from constituents urging their
Members to cover their butts.
Great work to all who joined our
efforts!
But the fight for colorectal
cancer screening legislation is
far from over. HR 1738, a bill that
would guarantee access to the
underinsured and uninsured for
colorectal cancer screening and
treatment, has well over 100 co-
sponsors from both parties. At
press time, it was still sitting in the
committee that oversees it, waiting
to be marked up and sent to the
House floor for a vote. On the
previous page, Dusty Weaver, C3’s
tireless Grassroots Coordinator,
spells out things that you can do to
ramp up pressure on your elected
officials in the hopes of getting that
bill made into law.
C3 thanks the following companies for a charitable grant which made
this issue of Momentum possible.
C3 maintains ultimate authority over newsletter content.
C3 Momentum Summer 2008
Kim Ryan, C3’s new Director of Patient
Information Services, is available to answer
your questions about colorectal cancer at
877-4CRC-111 (877-427-2111).
Finally, I would like to introduce a
new staff member to the C3 ranks.
Kim Ryan is our new Director of
Patient Information Services.
She knows firsthand the value of
having an informational resource
available for colorectal cancer
patients, as she lost her father,
Lt. General Martin J. Ryan, Jr.
(USAF, Ret), to colon cancer in
2005. She came to us with 15
plus years of experience within
the pharmaceutical industry,
which makes her an incredible
asset to our team, and to the
development and management of
C3’s Answer Line at 877-4CRC-111
(877-427-2111).
Keeping Cool with
Cancer During the
Summer Months
continued from page 1
Lastly, while most patients don’t
lose all their hair during treatment,
many experience thinning.
Whenever possible, be sure to
cover your head with a hat or a
scarf. We here at C3 are always
reminding you to “Cover Your
Butt,” and during these summer
months, it is also important to
“cover your head.”
Stay hydrated. As you go
though treatment, you may have
a hard time getting enough water,
especially if you have diarrhea
or feel nauseated. Many of the
treatments used for colorectal
cancer have diarrhea as a side
effect. Drinking 8 cups of water
a day (64 fluid ounces) will help
keep you hydrated during your
treatment. If consuming all
that liquid is difficult (another
treatment side effect), try sucking
on ice chips or popsicles or eating
sherbet/sorbet.
Of course, if Eloxatin is part of
your treatment, exposure to cold
can be painful. In this case, stick
to room temperature beverages,
and take care when going into air
conditioned buildings.
Wherever you are in your treatment
regimen, remember that knowledge
is power. The more you know
about the side effects of your
treatment, the easier it is to manage
them. Enjoy your summer!
For additional information about
colorectal cancer, call the C3
Answer Line at 877-4CRC-111
(877-427-2111).
7
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www.FightColorectalCancer.org/patients Learn all you can about
colorectal cancer diagnoses and treatments, how to manage side
effects, and how to cope with life with CRC. Discover resources
for support and strength on the internet and in your community.

Win the Fight Against Colorectal Cancer by

Changing the Political Landscape
Visit Advocacy.FightCRC.org to learn about C3’s activities on
Capitol Hill, including our efforts to increase funding for cancer
research and to pass colorectal cancer screening legislation.

Download C3’s position papers on issues that impact colorectal

cancer patients.

8 www.FightColorectalCancer.org