Archive for 2019
Mark Sorensen
Mark was the kindest of souls and everyone who met him adored him. He was the kind of gentle spirit who touched the lives of many. He was a man of great and steadfast faith. While we despair that Mark’s time on Earth was cut too short, we are also thankful for the years we…
Read MoreSilvia Navarro Hodlewsky
7/15/1967 – 11/18/2019 On November 18, 2019, a cherished friend and member of our community, Silvia Hodlewsky lost a courageous six and a half month battle with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma). Silvia was the loving wife to Andre Hodlewsky, and a wonderful mother to her two daughters Ariana and Alexis.…
Read MoreThanksGiving, ThanksLiving
Now it begins. Thanksgiving. Giving Thanks. Food, Family, Friends, Fun. Turkey, Traditions, Touchdowns, Travel. Tension?! I remember a little of what I think I learned about the “First Thanksgiving” as a child. The Pilgrims came from England on a ship. “If April showers bring May flowers, what do May flowers bring? PILGRIMS – Bazooka Joe”. …
Read MorePhase 1/2 Trial of TC-210 T Cells in Patients With Advanced Mesothelin-Expressing Cancer
TC-210 T cells are a novel cell therapy that consists of autologous genetically engineered T cells expressing a single-domain antibody that recognizes human Mesothelin, fused to the CD3-epsilon subunit which, upon expression, is incorporated into the endogenous T cell receptor (TCR) complex.
Read MoreAbelardo Enrique Marquez
On August 11, 2018 my father lost his battle with Cholangiocarcinoma a.k.a Bile Duct Cancer. He was a warrior and never wavered in his love for life or family all the way till the end. He smiled and found something beautiful in every day. In celebration of his life and to honor his memory, I…
Read More#GivingTuesday 2019
“Giving is not just about making a donation. It is about making a difference.” Last year on Giving Tuesday, people came together on Facebook to raise over $125 million to support the causes they care about. Building on this incredible momentum, and to further amplify that generosity, this year on December 3rd, starting at 8:00…
Read MoreTake Control of Your Health Data
By joining our CCF Patient Registry, your un-identified health information will provide important data to researchers to better understand cholangiocarcinoma and help develop new treatment options. To assist you with gathering your health information, CCF has partnered with Ciitizen to help our patients, at no cost to you, collect your health data, and should you choose, share it back with…
Read MoreEverything Happens for a Reason
About a month ago my dad got a Facebook message from Carlos, a good friend living in Guatemala. He mentioned that he was coming to the United States with his family soon and was asking about places he should visit in Utah. My dad recommended Zion National Park, Arches National Park and a few other…
Read MoreMike Shane Memorial Fund
The Mike Shane Memorial Fund helps reduce financial barriers for patients who need a second opinion on their initial diagnosis of cholangiocarcinoma*. Purview, a global healthcare technology company, created this fund in memory of Mike Shane, a longtime friend and supporter who passed away on April 28, 2019, after a year-long battle with cholangiocarcinoma. Mike…
Read MoreOktoberfest 2019
On September 21, 2019 Heidi Rhea’s dream of having a successful and lively family friendly Oktoberfest celebration, in support of the Cholangiocarcinoma Foundation (CCF), came true. The 1,200 plus attendees surprised even Heidi herself. Heidi, a patient of cholangiocarcinoma, is also an active volunteer with CCF. She plays a crucial part in helping bring awareness…
Read MoreA Single Arm Phase II Study of the Combination of DKN-01 and Nivolumab in Previously Treated Patients with Advanced Biliary Tract Cancer (BTC)
Study Name A Single Arm Phase II Study of the Combination of DKN-01 and Nivolumab in ClinicalTrials.gov Identifier (if applicable) NCT04057365 Clinical Trial Category (check all that apply) Beyond First Line Therapy Targeted Therapy Immunotherapy Study Center Institution Name Massachusetts General Hospital Cancer Center Institution Address 55 Fruit St City Boston State Massachusetts Zip Code…
Read MoreNotes from Chicago
CCF sponsored a half-day symposium at the University of Chicago last week. Here are some notes and impressions. It’s not complete, and perhaps I got some of it wrong. I’d appreciate comments and corrections. Stacie Lindsey outlined the history and mission of CCF. I can’t help but feel that her work and that of her…
Read MoreMartha “Martita” Octaviani
On October 19, 2019, Martha “Martita” Octaviani, beloved mother of two, from Lake Mary, Florida, passed away at the age of 62. Martha was born on April 12, 1957 to Hector and Marta Octaviani in Ponce, Puerto Rico. Martha earned degrees at the University of Puerto Rico and Seminole State College which allowed her to…
Read MoreTeamCCF at the Chicago Marathon
TeamCCF had 18 runners participate in the 2019 Bank of America Chicago Marathon, Sunday, October 13th. This year’s team was the largest to date with men and women of all ages from 13 different states. Together the team raised an unprecedented $49,485. And they will continue to fundraise through the month of October. Runners participate,…
Read MoreNo One Fights Alone
Written by Stephanie Zinis In May of 2018 our families’ lives were forever changed. A routine doctor visit led to an accidental discovery that my mom, Renee, had cholangiocarcinoma, a rare cancer affecting fewer than 40,000 per year. After my mom’s diagnosis we began researching and preparing for the future ahead. We came across many…
Read MoreMarie Margaret Gobl Dieckgrafe
Marie Margaret Gobl Dieckgrafe, 78, of Wichita, KS passed away on Oct 8, 2019 in Wichita, Kansas, surrounded by family. She was born Dec 7, 1940 in Mulberry Kansas, the daughter of Ferdinand II and Adeline Pickler Gobl. Marie graduated from Arma High school. Marie worked at Beech Aircraft for 37 years and was one…
Read MoreSevan Bedikoglu
Survived By, His Wife and Children, Tania Bedikoglu and Sean & Ryan His Mother, Nuvart Bedikoglu His Sister, Gulbenk & Sirenus Kocar His Nephews, Andre & Kevin Kocar His In Laws, Mr. & Mrs. Avedis & Geraldine Dishakjian Dear extended Families & Friends, it is the wish of the family that in Lieu of Flowers,…
Read MoreBreast cancer survivor speaks out about being your own advocate
In a segment from this NBC’s Today Show, Karen Peterson discusses her experience with breast cancer. She has been an advocate for herself and others since her diagnosis. She talks about her genomic testing, being informed about her treatment options, as well as the importance of advocating for herself.
Read MorePeter J. Mahr
From his 3rd Half Ironman just 4 years ago to living his best life on the waters of Tampa Bay, Peter finished this race on October 6, 2019. For just over a year he battled a very rare bile duct cancer, Cholangiocarcinoma, in Peter Mahr style. Always a do-er, not just a talker, he lived…
Read MoreRare Cancer Day
October 1 is Rare Cancer Day as proclaimed by the National Organization for Rare Disorders (NORD). The NORD website shares the goal is “To shine a light on the rare cancer community, a group of individuals who are often overlooked in the broader cancer community.” The President and Founder of the Cholangiocarcinoma Foundation (CCF) Stacie…
Read MoreMinneapolis Meetup
As the “instigator” who 11 years ago blissfully started getting mothers of active-duty Marines and eventually Marine vets to meet together to share experiences, information, and to just be with others “who get it”, I’m doing it again thanks to CCF. At the last annual conference, I met Caitlin Fortuna and her youngest daughter.…
Read MoreBank of America Chicago Marathon
Cholangiocarcinoma FoundationTeamCCFS.O.S. ProgramIncentive ProgramFundraising MinimumsRacesContact Bank of America Chicago Marathon Marathon – Sunday, October 13, 2024 Chicago, Illinois The fundraising minimum for the 2024 Bank of America Chicago Marathon is $1,500 if you register before November 17, 2023, or $2,000 after November 17, 2023. To apply you must: Sign the Chicago Marathon Contract Set up…
Read MoreSuggested Reading – Graeber
Charles Graeber, The Breakthrough: Immunotherapy and the Race to Cure Cancer, Twelve, 2018. “Cancer kills millions of people every year and is one of humanity’s greatest health challenges. By stimulating the inherent ability of our immune system to attack tumor cells James Allison and Tasuku Honjo have established an entirely new principle for cancer therapy.…
Read MoreWhy Jan & Dean Meyer Gave $125,000 to the Cholangiocarcinoma Foundation, and why they hope others will too
“Cholangiocarcinoma sucks, it’s a tough, tough cancer. Being difficult to diagnose, often diagnosed in later stages, and having limited treatment options, we knew we wanted to see how we could maybe help change that for future CCA patients” explained Jan Meyer, a current cholangiocarcinoma (CCA) patient. Recently, the Cholangiocarcinoma Foundation had the opportunity to interview Jan…
Read MoreDebora Mae (Lankford) Waite
Debora Mae (Lankford) Waite age 49, passed away peacefully in her home surrounded by family on August 31, 2019 after a courageous battle with cancer. Debora is survived by her loving husband Rick; her parents; her children, Ashley, Tiffany, Jacqueline, Amy, Kari, Jason, Kevin and Korey; her grandchildren, Cameron, Dylan, Matthew, Rylenn, Oliver, Peighton, Aria,…
Read MoreJustin S. Lee
5/1/1950 – 9/2/2019 On September 2, 2019, we lost our beloved father and husband to cholangiocarcinoma (bile duct) cancer after a 5 month battle at the age of 69. He was born in Taiwan and resided in East Brunswick, NJ for 27 years. He is survived by his wife Fengjwu Lee, his daughter Bertina and…
Read MoreUniversity of Chicago Regional Symposium
Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from the University of Chicago’s hepatobiliary team highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion…
Read MoreA Phase 3, First Line Study of Pemigatinib vs Gemcitabine/Cisplatin in Patients with Cholangiocarcinoma
This is a phase 3, first line treatment in patients with cholangiocarcinoma who have not received previous treatment and are FGFR2 rearrangement positive. This is a comparative study of pemigatinib (FGFR inhibitor) versus gemcitabine and cisplatin.
Read MorePhase Ib/II Trial of Nal-Irinotecan and Nivolumab as Second-Line Treatment in Patients With Advanced Biliary Tract Cancer
All patients on this study receive the chemotherapy combination of 5-FU, leucovorin and nanoliposomal irinotecan which has shown efficacy in pancreatic cancer (and is FDA approved). In addition, this trial adds immunotherapy (nivolumab) to this chemotherapy regimen to leverage the synergism of chemo-immunotherapy.
Read MoreWebinar: CCF & Ciitizen-Take Control of Your Health Data
On August 12, the Cholangiocarcinoma Foundation announced a partnership with Ciitizen. This partnership is formed around the belief that you should have full access to your health data. Cholangiocarcinoma patients have immediate access to the Ciitizen platform, which enables you to gather your medical records and leverage this platform to control your health data. When…
Read MorePROOF Trial: Phase 3 Study of BGJ398 (Oral Infigratinib) in First Line Cholangiocarcinoma With FGFR2 Gene Fusions/Translocations
The PROOF Trial is a global Phase 3 study enrolling patients with advanced/metastatic cholangiocarcinoma who have a FGFR2 gene fusion/translocation. Patients must not have received systemic anti-cancer treatment for advanced disease. Patients are randomized to receive either oral infigratinib (BGJ398) or standard chemotherapy (gem/cis).
Read MoreMichelle’s Hot Peeps Beat CC
Over 150 runners braved the Texas heat in Taylor, TX, on Saturday, Aug. 10th, to support the second annual “Michelle’s Hot Peeps Beat CC” 5K and Fun Run race to support finding a cure for cholangiocarcinoma. The event was planned in memory of Michelle McDonald who last her battle with the disease, at the age…
Read MoreRepurposing Drugs for Cholangiocarcinoma
Over three years ago I was diagnosed with an incurable cancer, at the age of just 39 when my 3 children were under the age of 5. Since then I have undertaken countless treatments including 30 chemotherapy cycles spanning 4 types, radiation, cyberknife, SRS, ablation, dendritic cell therapy, targeted drugs and immunotherapy, always with the…
Read MoreCholangiocarcinoma Foundation Awards $365k in Research Fellowship Grants in Largest Funding Cycle to Date
Since 2015, the Foundation has awarded more than $1.9 million in funding for innovative, high-quality research. SALT LAKE CITY, UTAH, USA, August 6, 2019 — The Cholangiocarcinoma Foundation (CCF), a nonprofit organization funding novel research for bile duct cancer, has awarded the 5th cycle of its Research Fellowship Program. CCF is pleased to support 7 projects for…
Read MoreThe Cancerbet – or What Cancer Does and Does NOT do – from A to Z
A Cancer AGES us but isn’t aging what we long for?! B It BLINDS us to far away, future concerns. It brings us to a “near- sighted” living where we don’t miss the present. C Cancer gives us CAUSE – a reason to try treatments and trials for new therapies; not only for our own survival, but for those who follow…
Read MoreMartha Ann Auble Alderman
Martha Ann Auble Alderman passed away peacefully in her sleep on Wednesday, July 31 after a brief, but hard-fought battle with cancer. She was 58. Martha was one of the kindest people you would ever meet, which she always proudly attributed to her midwestern roots. She was born on July 6, 1961 in Cleveland, Ohio…
Read MoreStudy of A166 in Patients With Relapsed/Refractory Cancers Expressing HER2 Antigen or Having Amplified HER2 Gene
Study for A166 monotherapy in HER2-expressing or amplified patients who progressed on or did not respond to available standard therapies. Patients must have documented HER2 expression or amplification. The patient must have exhausted available standard therapies. Cycles will continue until disease progression or unacceptable toxicity.
Read MoreA Phase 2 Study to Evaluate the Efficacy and Safety of Adoptive Transfer of Autologous Tumor Infiltrating Lymphocytes in Patients with Locally Advanced, Recurrent, or Metastatic Biliary Tract Cancers
This Phase 2 study will be conducted in conjunction with the companion harvest protocol protocol in patients with measurable disease who have lesions that can be resected or biopsied for Tumor Infiltrating Lymphocyte(TIL) growth. The Treatment Phase begins once the cells exceed the cell growth and potency requirements in the companion protocol.
Read MoreOlga Mech
It is with profound sadness that the family announce the passing of Olga, lifelong beloved wife, mother and grandmother and ‘mom’ to their devoted and loyal dog Olga’s love, smile, laughter and sincere warmth touched the lives of everyone she met, strangers became friends. To remember Olga for her love of people, singing and piano,…
Read MoreA Phase 3, First Line Study of Pemigatinib vs Gemcitabine/Cisplatin in Patients with Cholangiocarcinoma
This is a phase 3, first line treatment in patients with cholangiocarcinoma who have not received previous treatment and are FGFR2 rearrangement positive. This is a comparative study of pemigatinib (FGFR inhibitor) versus gemcitabine and cisplatin.
Read More2019 Annual Conference Videos
All of the presentations at our 2019 Annual Conference are online and waiting to be viewed! Visit our Conference in Review page for photos, a recap video and videos from many of the presentations, or if you prefer, visit our YouTube Channel, where we have all of the Conference Videos arranged into a playlist.
Read MoreKeynote Presentation from the 2019 CCF Annual Conference
Advancing technologies and the tipping point for Medicine Vivek Wadhwa, Keynote Speaker
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