Our Looseleaf Notebook
On January 10th, AndreaRemembered.org held the fourth annual “Andrea’s Night at the Discovery Lodge”. Over 500 were in attendance to celebrate her life and raise funds for the Cholangiocarcinoma Foundation and the Andrea M. Fuquay Memorial Scholarship at the University of Southern Indiana. This year, the “Andrea’s Night at the Saloon” event raised $132,000. Attendees bid on 33 live auction and 225 silent auction items donated by local businesses and individuals.
In total, AndreaRemembered.org has raised $250,000 towards “The Andrea M. Fuquay Memorial Scholarship” as well as $80,000 for bile duct cancer research.
Title: Surgical Management of Cholangiocarcinoma – State of the Art and Beyond
When:Thursday, Nov 13, 2014, 3:00 PM – 4:00 PM EST
Presented by: Dr. Tomoaki Kato, Chief of the Division of Abdominal Organ Transplantation at New York-Presbyterian Hospital/Columbia University Medical Center
Description: This webinar will feature Dr. Tomoaki Kato, a renowned expert in liver and intestinal transplantation and complex abdominal and hepatobiliary surgeries. Since 2008, Dr. Kato has served as Chief of the Division of Abdominal Organ Transplantation at New York-Presbyterian Hospital/Columbia University Medical Center. He has been leading the institution’s liver transplant program, using both deceased and living donor livers. This session will focus on current techniques being used for surgical management of cholangiocarcinoma and the promise of potential treatments for patients in the future. There will be time for Q&A.
“We were pleased to present Dr. Kato’s perspective of the complexity of liver and biliary surgery,” says Marion Schwartz, CCF Chief Advocacy Officer. She added: “This potentially curative surgery as well as the benefits of surgical palliation are of great interest to our patient community.”
Topic: Using Patients’ Own Immune System to Knock-out Cancer: Adoptive Cell Therapy
Steven A. Rosenberg, M.D., Ph.D., National Cancer Institute
Eric Tran, Ph.D., National Institutes of Health Surgery Branch, Tumor Immunology Section
Melinda Bachini, CCF Patient Advocate and NIH Research Study Participant
Join Dr. Steven A. Rosenberg (National Cancer Institute) and Dr. Eric Tran (National Institutes of Health) in a webinar about NIH clinical trial NCT01174121 using adoptive cell therapy, a technique that harnesses a person’s own immune system to battle cancer.
Dr. Rosenberg, M.D., Ph.D, a pioneer in the development of adoptive cell therapy, will discuss the background, objectives and frequently asked questions about this clinical trial.
Dr. Tran, Ph.D., will explain how scientists at the NIH were able to grow billions of immune cells that were infused back into patients to melt away tumors and how this therapy could apply to a wide range of cancers.
Melinda Bachini will share her journey as a cholangiocarcinoma patient and participant in this ground-breaking clinical trial.
Time will be available for Q&A.
- Patient’s Cells Deployed to Attack Aggressive Cancer – New York Times
- Scientists Use Patient’s Immune System to Kick Cancer – Time
- Technique Offers Major Advance in Cancer Fight – Boston Globe
- One Woman’s Cancer Battle and Promise of a New Treatment – WebMD
- A Blueprint for Fighting Cancer – DailyMail UK
Steven A. Rosenberg, M.D., Ph.D.
Dr. Rosenberg is Chief of Surgery at the National Cancer Institute in Bethesda, Maryland and a Professor of Surgery at the Uniformed Services University of Health Sciences and at the George Washington University School of Medicine and Health Sciences in Washington, D.C. He. received his B.A. and M.D. degree at The Johns Hopkins University in Baltimore, Maryland and a Ph.D. in Biophysics at Harvard University. After completing his residency training in surgery in 1974 at the Peter Bent Brigham Hospital in Boston Massachusetts, Dr. Rosenberg became the Chief of Surgery at the National Cancer Institute, a position he has held to the present time.
Dr. Rosenberg has pioneered the development of immunotherapy that has resulted in the first effective immunotherapies for selected patients with advanced cancer. His recent studies of cell transfer immunotherapy have resulted in durable complete remissions in patients with metastatic melanoma. He has also pioneered the development of gene therapy and was the first to successfully insert foreign genes into humans. His recent studies of the adoptive transfer of genetically modified lymphocytes has resulted in the regression of metastatic cancer in patients with melanoma, sarcomas and lymphomas.
Dr. Rosenberg is a member of the American Society of Clinical Oncology and served on its Board of directors. He is also a member of the Institute of Medicine of the National Academy of Sciences, the Society of University Surgeons, the American Surgical Association, the American Association for Cancer Research, and the American Association of Immunologists among others. Dr. Rosenberg is the author of over 950 articles in the scientific literature covering various aspects of cancer research and has authored 8 books.
Eric Tran, Ph.D.
Dr. Tran received his PhD in biochemistry from the University of Victoria in British Columbia, Canada, and is currently a postdoctoral fellow in the lab of Dr. Steven Rosenberg at the National Institutes of Health. Dr. Tran’s goal is to develop effective T-cell therapies against common solid cancers. This has led him to investigate the T-cell response against cancer mutations in patients with metastatic gastrointestinal (GI) cancers. His recent work on a patient with cholangiocarcinoma suggests that the adoptive transfer of T cells targeting a mutation uniquely expressed by that patient’s metastatic cancer appears capable of mediating tumor regression. Dr. Tran’s current efforts are focused on determining how often mutation-reactive T cells can be found patients with metastatic GI cancers and on developing methods to better harness the mutation-specific T-cell response against cancers.
At 46 years old, I am a wife and a mother of six beautiful children. My story began the end of October 2009 when I began to experience some extreme heartburn symptoms, tightness around my epigastric region and indigestion. I thought at the time that I might have gallstones. On December 1st, 2009, I was diagnosed with Intrahepatic Cholangiocarcinoma. Three weeks later I had 2/3rds of my liver resected with good margins. Unfortunately, at my three month checkup, metastasis was confirmed in my lungs.
I went to the Mayo Clinic in Rochester for a second opinion on my options, but they recommended the same treatment of Gemzar and Cisplatinin. They had no clinical trials available for me at that time.
I did the regimen of Gem/Cis for about 5 months with stable disease. Due to the toxicity of the Cisplatin they put me on Gemzar alone which resulted in growth in tumors. I was then switched to Avastin, which held the tumors at bay for a few months. I began having toxicity to the Avastin as well. After many attempts at trying chemotherapy, I found myself not wanting to spend the rest of the life I had left using a chemo that would not cure me but had already caused so much damage. Chemo was toxic and it was not holding against this growing cancer within me.
I found the NIH clinical trial shortly after this decision. It involved the initial chemo to deplete my immune system but after that it was my body fighting the cancer. In March of 2012, two years and four months after diagnosis, I entered into this trial at the National Cancer Institute in Bethesda, Maryland. I have had huge success with this treatment and I am hoping and praying that it will also benefit many others!
On September 29, CCF held its first web chat with guest speaker Bill Merriam. Bill recently created a new video for the Foundation to share his perspective on cancer. Participants were able to submit questions in advance and join the web chat to hear directly from Bill.
Bill is the father of 6 and grandfather of 13. He was diagnosed with cholangiocarcinoma in 2009. In this inspirational video and webchat, he shares his “story” and perspective on cancer from a marathon runner’s point-of-view:
“I have cancer but I am not going to let it stop me from being an active participant in the most active way that can as a father, spouse, and as a family-head so it becomes the new normal . . . I have a disease, the disease doesn’t have me.”
Some people with cholangiocarcinoma are unable to be cured because their tumor is either inoperable or has spread. These patients can develop blockages of the bile ducts or intestines causing jaundice, severe itching, nausea and/or vomiting. Palliative surgery or endoscopic procedures may be able to provide relief of symptoms. We will be discussing the role of biliary bypass and stenting for bile duct blockages as well the role of surgery and stenting for intestinal blockages.
Dr. Scott Celinski is a surgical oncologist who specializes in treating complex cancers of the liver and pancreas. He currently serves as the Director of the Pancreatic Cancer Research and Treatment Center at Baylor University Medical Center in Dallas, TX. His earned his medical degree from Baylor College of Medicine and performed his residency in General Surgery at George Washington University. He completed fellowships in Surgical Oncology and Hepatobiliary Surgery (at the University of Pittsburgh) and Critical Care (at George Washington University). When not at the hospital, Dr. Celinski enjoys beekeeping, gardening, and spending time with his wife and daughter.
Download the Presentation
Due to technical difficulties during the question & answer session, the responses by Dr. Celinski were not audible. Both the questions and answers have been transposed here for review:
Can you explain the criteria for patients getting bypass surgery for nausea and vomiting caused by the tumor? Doe it just depend on where you are being seen for treatment?
There is probably some institutional dependence. Also, would be if the nausea and vomiting related to a blockage from the tumor or is it a secondary effect of the tumor, which is very different for the treatment. If there is an actual physical blockage where the stomach feeds into the intestine, there are really two options for getting things to go through that. One would be an endoscopic stent which tends to work really well as a short term option. In patients who are living longer, then a surgical bypass tends to be better.
Are distal and extrahepatic cholangiocarcinoma the same?
Yes, for this discussion they are essentially the same. The treatment may be a little bit different in as far as an extrahepatic bile duct resection but for just the bypass, they are very similar.
Regarding transplant, I have heard that only patients with hilar cholangiocarcinoma can be transplanted. Are there facilities where distal and intrahepatic patients can be transplanted?
No, not that I am aware of. Initially back when livers were much more available for patients who needed livers, transplant was used much more for cholangiocarcinoma, but the results were uniformly dismal. It wasn’t until the Mayo protocol came out that for unresectable hilar cholangiocarcinoma. It’s a very select group that are eligible for transplant that get extensive treatment before transplant to make sure their cancer is not behaving aggressively and is all going to be taken out so it’s really just the hilar cholangiocarcinoma and even in that it is a select group of the smaller tumors that have no evidence of any spread.
An Important FREE Webinar: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobilliary Neoplasia Biorepository”
When: Monday, July 14, 2014 4:00-5:00 PM (EST)
Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN
Purpose: Educate patients, supporters and caregivers to understand how Mayo Clinic is using the information and bio-specimens provided to improve care all for cholangiocarcinoma patients.
How to register: https://www1.gotomeeting.com/register/373138793
More details attached to link below! Join Us!!!! Share with others!!!
Webinar: Update on Cholangiocarcinoma – What we have learned from the International Hepatobiliary Neoplasia Biorepository
Topic: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobiliary Neoplasia Biorepository”
Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN
Purpose: Educate patients so they better understand how Mayo Clinic is using the information and bio-specimens they provide to improve care all for cholangiocarcinoma patients.
Download the Powerpoint Presentation
For those of you in the Sonoma, CA area, please consider attending “The 2014 Sonoma Bili Project Experience” on August 2nd hosted by The Bili Project Foundation. The event hosted by Cedric the Entertainer includes dinner, live and silent auctions, and celebrity golf foursomes. Proceeds benefit the UCSF Hepatobiliary Tissue Bank. For more information, contact Melissa Searle at firstname.lastname@example.org.
Cholangiocarcinoma patient, Valarie Spiser-Albert beat the odds with her positive attitude
Three years ago, Valarie Spiser-Albert was diagnosed with cholangiocarcinoma. She was told she had 6-8 months to live but her with her positive attitude, she beat the odds! Check out her story and video. Thanks for KSAT TV for sharing this inspirational story.