LEGISLATIVE BEAT

Clinical Trials: State-of-the-Art Care Today,New Hope for Tomorrow

1414 Prince Street, Suite 204, Alexandria, VA 22314(703) 548-1225 • www.FightColorectalCancer.org

Amy Sears knew about clinical trialsbecause, as a software engineer at theMinnesota Mayo Clinic, she had testedcomputer programs for collectingclinical trial data. But as a 34-year-old mother of two young children,she certainly didn’t expect to need acancer trial. However, one Monday atwork she had severe abdominal pain.Exactly one week later she was insurgery for colon cancer.“I thought it was the end of my life,”she remembers. Like Amy, most newlydiagnosed patients are overwhelmedwith fear and not ready to think abouta clinical trial to improve treatmentsfor future patients. They just want thebest possible care to help save theirlives.That’s exactly why Dr. Rocky Morton,a community oncologist in Des Moines,Iowa, considers clinical trials for mostof his patients at the time of diagnosis.“I believe that patients in clinical trialscan truly get better care,” he says. “If the doctor and patient are involved in atrial, it ramps up the care.”“Many people think that in a clinicaltrial, some patients just get a ‘placebo’(no real treatment) while othersget the ‘real’ treatment,” adds KateMurphy, C3’s Director of ResearchCommunication and herself a 25-year

continued on page 6

VOLUME 3, ISSUE 4 SUMMER 2008

FROM THEPRESIDENT’S DESK ........................2PREVENTIONScreening Saves Lives ...................3POLICYMeet Catherine Knowles ..............4ADVOCATES IN ACTION ................5

C3 thanks Genentech BioOncology for anunrestricted charitable grant which madethis issue of

Momentum

possible. C3 is solely responsible for newsletter content.

Moving towards better care and a cure

C3: MomentumC3: Momentum

VOLUME 5, ISSUE 1 WINTER 2010

Winning the fght against colorectal cancer

IN THIS ISSUE

By Mary Mitiguy Miller

They’ve been called the unsung heroesof modern medicine--those who voluntarily join clinical trials testingnew treatments or procedures.Most people assume that these heroes volunteer for clinical trials onlybecause they have very advancedcancer that hasn’t responded to anyother treatments.Not true. Amy Sears, for example,had undergone successful surgeryfor colon cancer and was starting sixmonths of chemotherapy to furtherdecrease the chance of recurrencewhen she agreed to join a clinical trial.In fact, clinical trials can be an optionfor people at all stages of diseaseor health. Of the more than 250colorectal cancer trials currentlyunderway in the U.S., many are testingways to prevent or detect very earlycancer. One trial is testing a vaccinethat would recognize precancerous protein in polyps and trigger the person’s immune system to destroythe polyps before cancer develops. Another trial is comparing differentimaging techniques to nd which tests(and frequency of tests) best detectnew or recurrent cancer.Yet many trials are delayed or evencancelled because researchers can’tnd enough participants. Only 3 to 5%of cancer patients participate in trials.

Jessica Mitchell (left), oncology nursepractitioner at the Mayo Clinic made surethat patient Amy Sears (right) had all theinformation needed before deciding to join aclinical trial.

P H O T O B Y J O E K A N E , M A Y O C L I N I C

www.FightColorectalCancer.org2

Although C3 is still considered a youngorganization (we’ll be starting ourfth year in March), our friends andadvocates feel like old, dear friendsto us. And as we nish off 2009, it’snice to remember all that we’ve beenthrough together.We’ve marched on Congress, we’veooded the phone lines to the Capitol,we’ve put new research dollarstoward beating late-stage colorectalcancer and we’ve held companies andgovernment agencies accountable to patients.C3 is changing the landscape forcolorectal cancer patients. We are ableto do this because of the support wereceive from you, our friends. Thank you for all that you have done toforward the colorectal cancer cause,and all that you have done to help C3become the organization it is today.In the past six months, we saidgoodbye to Joe Arite, C3’s PolicyDirector since 2007, who left theorganization to follow his heart toChicago. We were thrilled to nd awonderful addition and perfect t inCatherine Knowles, C3’s new Directorof Policy (page 4).We provided another young researcherthe opportunity to make a differencein colorectal cancer by awardingour second Lisa Fund Researchgrant to Dr. Jeffrey Chou, who isstudying colorectal cancer stem cells.The search for the third Lisa FundResearch grant recipient is underwayright now, and will be announced nextspring. One hundred percent of thegrant funding came from C3 donors,

FROM THE PRESIDENT’S DESK

Board of Directors

Nancy Roach

Board Chair

Alan Balch, Ph.D.,

Vice Chair

Steven Depp, Ph.D.,

Treasurer

Robert Erwin,

Board Secretary

Carlea Bauman,

President

Gordon Cole

Medical Review Network

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-Josef Lenz, MD, FACP

University of Southern California

John Marshall, MD

Georgetown University MedicalCenter

Howard McLeod, PharmD

University of North Carolina

Neal Meropol, MD

Fox Chase Cancer Center

Edith Mitchell, MD

Thomas Jefferson University

Daniel Sargent, Ph.D.

Mayo Clinic College of Medicine

Joel Tepper, MD

University of North Carolina

Thanks for a Year of Friendships and Successes

By Carlea Bauman

President

and 100 percent of it went directlyto Dr. Chou. By the end of 2010, C3will have committed nearly $100,000to research for late stage colorectalcancer (www.FightColorectalCancer.org/LisaFund).We’re looking forward to seeingold friends and making new ones atthe 2010 Call-on Congress in March(page 5 and back cover). We hopethat anyone touched by colorectalcancer in any way – as a patient,caregiver, family member, friend ormedical professional – will come toWashington, DC to have their voicesheard. Our empowering and inspiringevent has had a major impact oncolorectal cancer legislation andresearch funding.On a personal note, I am thrilled toannounce that in August, my husbandand I adopted a baby girl. I took sometime off in the fall to spend with ournew daughter — time that I cherishedimmensely. The C3 staff and Board of Directors didn’t skip a beat while I wasknee deep in formula and diapers forthree months. They have my unendinggratitude for picking up the extra workwith humor, grace and overwhelminggenerosity. I returned to work full timein November.So, please join us as we celebrate oursuccesses, which could not have beenachieved without your support andgenerosity. We also remember thosewho have lost their ght and in theirmemory we will work even harder.May you all have a wonderful holidayseason and a happy new year.

2009 Annual Report

To obtain a copy of C3’s 2009 AnnualReport contact Jerri Lyn Mooney at1-703-548-1225x10 or you candownload a copyat http://link.FightCRC.org/09AnnualReport.

2009 ANNUAL REPORT

C3 Momentum Winter 20103

LEGISLATIVE BEAT

PREVENTION

Screening Saves Lives: Do It

By Carlene Canton

The facts are clear: screening forcolorectal cancer saves lives bydetecting the cancer at early stageswhen it can be successfully treated.Even better: screening preventscolorectal cancer by detecting andremoving the polyps that can turn intocancer.President Obama said as much in hisspeech before the joint session of Congress in September,

“...There’s no reason we shouldn’tbe catching diseases like breast cancer and colon cancer beforethey get worse. That makes sense,it saves money, and it saves lives.”

Eric Vogt, 67, is one colorectal cancer patient who is glad the word is nallygetting out. He offers his own story asa case in point. He rmly believes thata colonoscopy in 2008 that found stageIII colon cancer saved his life. He onlywishes he had gotten a colonoscopyten years earlier.Eric’s is a cautionary tale. He offerswords of warning to people over theage of 60 who a decade or more agomay have initially been told that aexible sigmoidoscopy (ex sig) onceevery ten years was all they needed to protect themselves from colon cancer.“A ex sig only looks at the rst 18inches of the colon. A colonoscopylooks at the entire colon, and will nd polyps or cancer beyond the reach of the ex sig.”When he turned 50, Eric wanted to geta colonoscopy, because his brother’scolonoscopy had revealed polyps. Buthis insurer didn’t cover colonoscopy asa routine screening tool and he had aex sig screening instead.Fifteen years later, after he turned65, he had a Medicare-coveredcolonoscopy. That’s when he foundthat he had stage III colon cancerlocated on the right side of his colon,beyond the reach of the ex sig.His doctors told him the cancerwas slow-growing, and had it beendiscovered 10 to 15 years earlier, itcould have been easily removed –maybe even at the polyp stage. Inthat case, he likely would never havedeveloped colon cancer at all.Eric was no stranger to the earth-shattering news of a cancer diagnosis.Six years ago, at age 61, he wasdiagnosed with stage III multiplemyeloma.Eric spent three years in rigoroustreatment for myeloma, a cancer hebelieves he contracted after decades of reghting, in which he was exposedto toxins and pesticides, including Agent Orange. His multiple myelomahas been in remission since 2004.But the retired reghter is not one tolook back. Instead, he looks forward:to remission, to future screenings andto spreading the word to his familyand friends that colorectal cancerscreening saves lives.It wasn’t all that long ago that peopledidn’t discuss breast cancer in polite

Eric Vogt cherishes time with hisgrandchildren.

ScreeningRecommendations

In a perfect world everyone who needsa screening colonoscopy would be ableto get one, covered by insurance andperformed by a highly experiencedmedical team. We are not there yet.“Any screening is preferable to noscreening,” says Dr. Heinz-Josef Lenz, Professor of Medicine in theUniversity of Southern California(USC) Departments of Medicine andPreventive Medicine, and Co-Director of the Colorectal Center at the USC/NorrisComprehensive Cancer Center.While “colonoscopies are the goldstandard of screening,” says Dr Lenz,there are alternative screening methodsavailable. The United States PreventiveServices Task Force recommends thefollowing minimum screening schedulefor adults 50 to 75 years of age: (1) ascreening colonoscopy every ten years,(2) a sigmoidoscopy every ve yearswith high-sensitivity stool tests everythree years or (3) a high-sensitivity stooltest for hidden blood done yearly.Family history or any positive testresults may require a dierent screeningschedule. To read more, check the UnitedStates Preventive Services Task Forcescreening recommendations at http://link.FightCRC.org/crcscreen.

society, and many to this day areuncomfortable mentioning colon,rectal, or anal cancer out loud. As atrue believer that screening saves lives,Eric isn’t shy talking about colorectalcancer. “A lot of people don’t wantto talk about colon cancer and, asa result, people could have a familyhistory of it without even being awareof it,” he said.That was the case in his own family.He learned that an uncle and acousin both had advanced colorectal