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Life Raft Group Jan. 2008 Newsletter

Life Raft Group Jan. 2008 Newsletter



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Published by The Life Raft Group
The Life Raft Group (LRG) is an organization that provides support, information and assistance to patients and families with a rare cancer called Gastrointestinal Stromal Tumor (GIST). The LRG achieves this by providing an online community for patients and caregivers, supporting local in-person meetings, patient education through monthly newsletters and webcasts, one-on-one patient consultations, and most importantly, managing a major research project to find the cure for GIST.
The Life Raft Group (LRG) is an organization that provides support, information and assistance to patients and families with a rare cancer called Gastrointestinal Stromal Tumor (GIST). The LRG achieves this by providing an online community for patients and caregivers, supporting local in-person meetings, patient education through monthly newsletters and webcasts, one-on-one patient consultations, and most importantly, managing a major research project to find the cure for GIST.

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Published by: The Life Raft Group on Jan 22, 2008
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 Battling gastrointestinal stromal tumor
By Dr. Ron DeMatteo
Memorial Sloan KetteringCancer Center
or most cancers, the com-bined use of multiple differ-ent types of therapy is the mosteffective approach. Over thelast several years, we have applied thisphilosophy to GIST. Inthis article, I will re-view our current under-standing of multimodal-ity therapy for bothprimary GIST and me-tastatic GIST.The gold standard of therapy for primaryGIST is surgery. However, despitecomplete removal of all visible disease,as many as half of patients will developtumor recurrence. We at MemorialSloan-Kettering Cancer Center(MSKCC), and others, have found thatthe likelihood of recurrence depends onseveral features of the tumor. As withmany tumors, size predicts outcome.Patients with tumor size greater than tencentimeters do not do as well as thosewith smaller tumors. Tumor location isalso important. Patients with GIST thatarises in the stomach fare better thanthose with small intestine GIST. Thedominant predictor of recurrence is mi-totic rate (the number of dividing tumorcells that the pathologist sees per 50 mi-croscopic fields). Patients with a mitoticrate of less than five have approximatelya 20 percent chance of recurrence by fiveyears after surgery compared to an 80percent chance for those with a highermitotic rate. The relationship of mutationto recurrence after removal of a primary
A look back at 2007 anda look ahead at what isto come in 2008.
By Norman Scherzer
LRG Executive Director
he advent of the New Year is awonderful opportunity to takestock of what the Life RaftGroup has accomplished in2007, as well as reflect on what has al-ready begun and what we still hope toachieve. It is hard still to list the tri-umphs and defeats of the last year in thisarticle, when the ultimate defeat, thedeath of GIST patients, continues to takecenter stage. But our tradition is to lightcandles to celebrate the lives of thosewho have left us and not mourn the past.With the birth of a new year, we look forward to new developments, newprecedents, new resources, new treat-ments and new hope.
A Look Back
We expanded the content and thescope of our informational and educa-tional efforts. Once again, we haveraised the bar for scientific content inour monthly newsletters and struggled tomaintain a balance between coveringcoping issues and heroic stories of ourmembers and providing the scientificmaterial that researchers, clinicians anda growing number of patients and care-givers have come to depend upon tokeep them informed. We also creatednew educationalmaterials, includinga cutting-edge pam-phlet on“Navigating GISTClinical Trials” andbuilt a new and so-phisticated systemfor tracking theseclinical trials. Webegan a series of monthly webcasts featuring experts inclinical care, research and education andarchived them in a new onsite webcastlibrary.We continued to expand the content of our websites and have almost completedour first total redesign and reorganiza-tion of the LRG website. We are plan-ning to launch this in a few weeks.On an ongoing basis, we have coun-seled patients one-on-one about theiroptions for choosing and accessing treat-ment and we intervened, on numerousoccasions, behind the scenes to over-come obstacles to obtaining life-savingdrugs. Our advocacy efforts continued,confronting cutbacks in Medicare andinsurance coverage for GIST patienttreatment.As an ongoing special mission weonce again tried to bring quality care andcoordinated research to the treatment of pediatric GIST patients. We co-sponsored, with the National Institutes
2007 Executive Director’s Report
January 2008 Vol. 9, No. 1
In memory of William Fraser, Edward Friedman, NanMustard, Judy Earle, Dan Scherban & Ken Lundell
See DEMATTEO, Page 6
Molecular therapy & surgery combined in GIST 
Ensuring That No One Has To Face GIST Alone — Newsletter of the Life Raft Group — January 2008 — 
The Life Raft Group
Who are we, what do we do?
The Life Raft Group is an interna-tional, Internet-based, non-profit organi-zation offering support through educa-tion and research to patients with a rarecancer called GIST (gastrointestinalstromal tumor). The Association of Can-cer Online Resources provides thegroup with several listservs that permitmembers to communicate via secure e-mail. Many members are being suc-cessfully treated with an oral cancerdrug Gleevec (Glivec outside theU.S.A.). This molecularly targeted ther-apy represents a new category of drugsknown as signal transduction inhibitorsand has been described by the scientificcommunity as the medical model for thetreatment of cancer. Several new drugsare now in clinical trials.
How to join
GIST patients and their caregiversmay apply for membership free ofcharge at the Life Raft Group’s Website, www.liferaftgroup.org or bycontacting our office directly.
Privacy is of paramount concern, andwe try to err on the side of privacy. Wedo not send information that might beconsidered private to anyone outsidethe group, including medical profession-als. However, this newsletter serves asan outreach and is widely distributed.Hence, all articles are edited to maintainthe anonymity of members unless theyhave granted publication of more infor-mation.
How to help
Donations to The Life Raft Group,incorporated in New Jersey, U.S.A., asa 501(c)(3) nonprofit organization, aretax deductible in the United States.Donations, payable to The Life RaftGroup, should be mailed to:The Life Raft Group40 Galesi Dr., Suite 19Wayne, NJ 07470
We are patients and caregivers, notdoctors. Information shared is not asubstitute for discussion with your doc-tor. As for the newsletter, every effort toachieve accuracy is made but we arehuman and errors occur. Please advisethe newsletter editor of any errors.
By Laura Kukucka
This article was reprinted from LauraKukucka’s CarePage with her permis-sion. You can view her CarePage at www.carepages.com. CarePage name: LauraKukucka
y life...My mom and I wereout shopping togetherrecently, while Phil was at home work-ing on our attic remodeling. I had beentrying to call him for awhile andwasn’t getting an answer, and Iwas starting to get worried. Mymom asked why I was so con-cerned, and without really thinkingabout it, I told her that I’m just sodarn lucky, and I’m afraid my luck willrun out eventually and something badwill happen. She gave me the strangestlook and said, “You know, those arereally odd words coming from a cancerpatient.” I’ve had a lot of people overthe years who’ve told me how rotten myluck is. After all, take a glimpse into myworld:
I don’t have a regular hairdresser,but I bought a Christmas gift for thewoman at the James [Cancer Center]who draws my blood every 2 weeks.
I let casual work acquaintancesthink I’m just weird when I exhibit oddbehavior, like walking slowly if I’m inpain or throwing up in the office bath-room if something doesn’t agree withme. I hate people feeling sorry for me,and I figure whatever their imaginationcomes up with, it won’t be anything ascrazy as the truth (which is that I haveno stomach and, according to the PETscanner, “at least 25 hypermetaboliclesions” in my liver).
Along the same lines, I let peoplethink I’m just a non-drinking square,rather than explaining all the reasonswhy I don’t/can’t drink alcohol.
I have a 7-inch scar down the centerof my belly that people stare at if I weara bikini…but it doesn’t stop me fromwearing them. I’m proud of my battlescar!
When well-meaning people ask meif/when Phil and I are going to havekids, I just nonchalantly respond, “Nah,when you get it right the first time youdon’t need to have any more…” becauseit’s just so much more socially accept-able than saying, “actually, our healthwon’t allow us to have a baby togetherand some days it doesn’t bother me, butother days it breaks my heart.”
I have to take a painkiller everynight if I want to sleep in any positionother than flat on my back.
Terms like “lymphoproliferative”,“hyperplasia” and “duodenum” are sec-ond nature to me, and I can explain thedifference between “histology”,“pathology”, “etiology” and“hematology”.
I truly no longer remem-ber what it’s like to *not*have cancer.So…I guess I can see where someonemight think I drew the short straw inlife. But, really? I think I’m one of the
See LUCKY, Page 11
Laura sees pot o’ gold,even if no one else can
Laura Kukucka poses with husband,Phil and son, Jake in Disney World.
Ensuring That No One Has To Face GIST Alone — Newsletter of the Life Raft Group — January 2008 — 
January 2008 clinical trial update
See TRIALS, Page 9
Perifosine+ Gleevec
Phase II Study of Perifosine Plus Gleevec for Patients With GIST 
Phase:Conditions:Strategy:NCT#:US Contact:Telephone:US Sites:IIGISTMultiple TargetsNCT00455559Online Collaborative Onc. Groupocogtrials@ocog.net415-946-2410
Cancer Center at Century City
,Los Angeles, CA
Sant Chawla
, MD
Coeur D’Alene
, ID
Oncology Specialists
, Park Ridge, IL
Kathy Tolzein, RN, 847-268-8200Grand Rapids, MISayre, PA
MD Anderson
, Houston, TX800-392-1611
By Jim Hughes
LRG Science Team Member
The following new United States trialswere reported in the December 2007  Newsletter as part of the InternationalClinical Trial Update. They have nowbeen added to the US table and are re- peated here for US readers. All contact information is listed in the table below.
XL820 Phase II:
Exelixis has an-nounced this trial as currently open inPark Ridge, IL. Plans are also underwayto open at Dana-Farber and at UCLA in2008. This is a
Phase II trial for GISTonly
.AUY922 Phase I:
AUY-922 is anHSP-90 inhibitor manufactured by No-vartis. Patients may not have had priorHSP-90 or HDAC inhibitor therapy.Novartis study ID is CAUY922A2101.
Perifosine plus Sorafenib Phase I:
 Oncology Specialists in Park Ridge, ILhas called to inform us they have Phase IPerifosine + Sorafenib. Perifosine is anHDAC inhibitor. Sorafenib inhibits mul-tiple tyrosine kinase targets associatedwith GIST.
SNX-5422 Phase I:
“Safety and Phar-macology of SNX-5422 Mesylate inSubjects With Refractory Solid TumorMalignancies” has opened in Nashville,TN and Scottsdale, AZ. SNX-5422 is anHSP-90 inhibitor made by Serenex.
STA-9090 Phase I:
STA-9090 is anHSP-90 inhibitor. According to theSynta press release, in preclinical stud-ies, “STA-9090 has shown the ability toinhibit multiple kinases with comparablepotency to, and a broader activity profilethan specific kinase inhibitors such asGleevec, Tarceva and Sutent. In addi-tion, STA-9090 has shown potency tento 100 times greater than the geldanamy-cin family of Hsp90 inhibitors, as wellas activity against a wider range of kinases. In in vivo models, STA-9090has shown strong efficacy in a widerange of cancer types, including cancersresistant to Gleevec, Tarceva, andSutent.” This open-label Phase I study inpatients with solid tumors is designed toidentify the maximum tolerated dose of STA-9090 based on a twice-a-week in-travenous dosing schedule. In addition toan evaluation of safety and tolerability,patients will be assessed for responserate based on the RECIST criteria. Asecond Phase I study with an alternative,once-a-week dosing schedule is planned.
XL765 Phase I:
Manufacturer Ex-elixis is sponsoring a Phase I trial of itsPI3K and mTOR inhibitor XL765 at twosites in the United States: Wayne StateUniversity, Detroit, Mich. and START,San Antonio, TX.
The following additional updates havebeen made to the US Trial table:
AMN107 Phase III:
H. Lee MoffittCancer Center in Tampa, Flor. and MDAnderson in Houston, TX are now openand have been added as sites. Trial num-ber is CAMN107A2201.
 IPI504 Phase I:
Mount Sinai Hospitalin Toronto, Canada has been added as asite. Martin Blackstein, MD is the Prin-cipal Investigator.
 Sorafenib (BAY 43-9006) Phase II:
A new site has been added. Arthur G.James Cancer Hospital and Solove Re-search Institute at Ohio State UniversityMedical Center, Columbus, Ohio.
BEZ 235
Phase I
: Now open at theSarah Cannon Research Institute inNashville, Tenn. BEZ235 is a Novartisdrug that targets the PI3K tyrosinekinase and indirectly inhibits the down-stream targets AKT and mTOR. Alsoavailable at the Nevada Cancer Institutein Las Vegas.
KOS1022 Phase I:
We were informedin late November that this trial at Colo-rado University in Aurora, Col. is onhold for toxicity
Imatinib+Pegylated Inter-feron-a 2B
 A Phase II Study combining targeted ther-apy with immunotherapy using imatinib +Pegylated Interferon-a 2B in imatinib-naïveGIST patient 
Phase:Conditions:Strategy:Study #:US Contact:IIGISTKill GIST Cells,HCI 22172
Univ. of Utah, Salt Lake City, UT
Huntsman Cancer InstituteCandace, 801-581-4477
Study of XL820 given orally to subjectswith solid tumors
IIGISTMultiple targetsNCT00570635
Christiaan McEwen, 415-337-1754,christiaan.mcewen@quintiles.comOncology Specialists, Park Ridge, ILKathy Tolzein, RN: 847-268-8200
Phase:Conditions:Strategy:NCT#:US Contact:US Sites:
(BAY 43-9006, Nexavar)
Sorafenib in treating malignant GIST patientsthat progressed during or after previous treat-ment with imatinib and sunitinib
Phase:Conditions:Strategy:NCT#:US Contact:Telephone:US Sites:IIGISTMultiple TargetsNCT00265798Univ. Of Chicago Cancer Res. Cent.,Chicago, ILClinical Trials Office, 773-834-7424
City of Hope
, Duarte, CAWarren Chow, MD, 866-434-4673 xt64215
Cancer Care Specialists
, Decatur, IL
James Wade III, MD, 217-876-6617
Onc./Hem. Assoc. of Cent. Il
,Peoria, ILJohn Kugler, MD, 309-243-3605
, Boston, MATravis Quigley, RN: 617-632-5117
Memorial Sloan-Kettering
, NewYork, NYDavid D’Adamo, MD, 212-639-7573
Ohio State Univ.
, Columbus, OHClinical Trials Office, 614-293-4976

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