Category Archive for: ‘Other News’
The Bili Project Foundation to Benefit From Sales of New Book!
We’ve got some exciting news to share! The Bili Project Foundation’s Co-Founder, Joy Stephenson-Laws, has written a book and part of the proceeds will benefit The Bili Project Foundation. There is a chapter that discusses the relationship between minerals and cancer and we hope you will support our foundation by purchasing this book or considering gifting it to a loved one.
Remember, it’s never too late to start taking steps to improve your health.
Click HERE to purchase!
On behalf of the GI Cancers Alliance, co-chair Martha Raymond created a brief 12 question survey to assess the unmet needs of the GI cancer patient & survivor community. Identifying & better understanding these unmet needs will help shape our programming and education efforts for @GICAlliance moving forward.
CLICK HERE to complete.
FOR IMMEDIATE RELEASE
The Bili Project Foundation Joins GI Cancers Alliance to Elevate Patients’ Voices Against Gastrointestinal Cancers
Twenty organizations unite to raise awareness, provide education and advocate for gastrointestinal cancers
Burbank, CA (JUNE 7, 2016) — The Bili Project Foundation joins 19 other cancer advocacy groups from around the United States to form the GI Cancers Alliance, committed to the fight against gastrointestinal cancers, which include many of the leading cancer killers.
The mission of the GI Cancers Alliance is to raise awareness, provide education and advocate for the prevention, treatment and cure of gastrointestinal cancers through a collaboration of advocacy groups, industry and institutional partners.
The groups’ organizers have come together because of a shared goal to create a stronger more unified voice in the fight against gastrointestinal cancers.
The groups’ leadership met June 4 during the ASCO Annual Meeting in Chicago to elect its chairs: John Hopper, executive director of the Fibrolamellar Cancer Foundation, and board director of the National Pancreas Foundation; and Martha Raymond, executive director of Michael’s Mission and founder/CEO of The Raymond Foundation and Alliance co-chair.
In addition to The Bili Project Foundation, the 19 other organizations of the Alliance include Pancreatic Cancer Action Network, Colon Cancer Alliance, Prevent Cancer Foundation, Beat Liver Tumors, The Cholangiocarcinoma Foundation, Colon Cancer Challenge, Debbie’s Dream Foundation: Curing Stomach Cancer, Esophageal Cancer Action Network, Fibrolamellar Cancer Foundation, Fight Colorectal Cancer, Gastric Cancer Foundation, Global Liver Institute, Hope for Stomach Cancer, Michael’s Mission, National Pancreas Foundation, No Stomach for Cancer, The Raymond Foundation, The Ruesch Center for the Cure of GI Cancers, and Target Cancer Foundation.
The participating groups represent the various types of cancers that make up gastrointestinal cancers, or the group of cancers that affect the digestive system. This includes cancers of the esophagus, gallbladder, bile duct, liver, pancreas, stomach, small intestine, bowel (large intestine or colon and rectum) and anus.
Lilly Oncology and Taiho Oncology are the founding industry non-voting members of the GI Cancers Alliance. They provide funding for advocacy activities and education.
The Alliance will focus on creating programs to raise general awareness about GI cancers and create resources and tools that will fill gaps for patients where they can make the largest impact.
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Gloryanne Bryant, RHIA, CDIP, CCS, CDIP
AHIMA Approved ICD-10-CM/PCS Trainer
Hepatobiliary cancer is a challenge in medicine because it is very hard to detect and is the leading cause of biliary tract obstruction, after gallstones. These cancers are notoriously difficult to diagnose, molecularly and genetically highly heterogeneous, and refractory to standard therapies. Hepatobiliary cancers are the 7th leading care of cancer death in the United States and the 3rd leading cause of cancer deaths worldwide. Hepatobiliary cancers are on the rise in the U.S. with increasing numbers of cases projected.
Risk Factors: Some of the known risk factors for Hepatobiliary cancer are as follows:
- Long-term infection with hepatitis B or hepatitis C
- Heavy alcohol use
- Type 2 diabetes
- Inherited metabolic disease
- Exposure to toxins such as arsenic, aflatoxins, vinyl chloride, and thorium dioxide
- Anabolic steroids
Signs/Symptoms: The warning signs and symptoms which sometimes resemble other medical conditions or problems occur with Hepatobiliary cancers. Signs and symptoms include:
- Abdominal pain
- Poor appetite
- Weight Loss
- Pale stools
- Dark Urine
Diagnosing: Diagnostic tools for Hepatobiliary cancers may include:
Endoscopic retrograde cholangiopancreatography — ERCP is a procedure used to create images of the digestive tract. During an ERCP procedure, doctors insert a thin, lighted tube into the mouth and down through the stomach to produce an image of the surrounding organs and glands.
Magnetic resonance cholangiopancreatography — MRCP is similar to an MRI, except that it uses specialized software to target the pancreas and bile ducts and create detailed images.
X-ray, CT, MR and PET scans are often needed to show the location and extent of the cancer.
Also used are blood samples for tumor makers including alpha-fetoprotein (AFP) cancer antigen 19-9 (CA 19-9) and cancinoembryonic antigen (CEA) may be tested to guide the diagnostic evaluation.
To confirm a diagnosis, doctors will need to remove a small piece of tissue from a tumor for testing. Often, a biopsy sample can be collected during an ERCP procedure, if one is performed.
Treatment: Depending on the location of the tumor, where the cancer originated, the stage of the cancer, and the overall health of the patient, several techniques may be used, either independently or together, to attempt to slow tumor growth or relieve pain. The following are options that may be considered:
- Liver transplantation
External beam radiation therapy is also a treatment option that involves a series of daily outpatient treatments to accurately deliver radiation to the area at risk.
Surgery may be necessary to remove the cancerous tissue as well as any nearby non-cancerous tissue. Surgery may also be used to relieve any blockage of the bile duct or to relieve symptoms.
Stent placement is another treatment choice that will help drain bile that builds up on the area. The stent also helps to bypass the blockage that causes symptoms such as pain or yellowing of the eyes and skin. A stent may be placed temporality until surgery can be performed to remove any cancerous tumor(s) or a permanent stent may be placed.
For coding professionals understanding disease processes and having knowledge of clinical indicators is a foundational competency for accurate clinical coding. Learning and enhancing our knowledge and skills are basic to quality clinical data that can help with research, reimbursement and population health.
References and for more information: http://www.thebillproject.org; http://www.treatcancer.com/hepatobiliary-cancers/; http://www.ucsfhealth.org/newsletters/inside_surgery/summer_2012/new_hepatobiliary_service/index.html
Currently, as of September 11, 2015, there are 211 patients with banked samples in the UCSF Hepatobiliary Tissue Tumor Bank. As mentioned before, the Foundation believes that the ongoing maintenance of such a bank, specifically for Hepatobiliary tumors, will significantly enhance the ability to accurately diagnose and treat patients with these deadly diseases.
The graph below summarizes the patient enrollment data for the Hepatobiliary Tissue Bank. The graph begins from the HBTB activation month and year (August 2012) and charts through September 2015. When the HBTB was activated it started out with 25 cases that were migrated from a pre-existing collection – a clinical trial that began years before the tissue bank opened. The UCSF Medical team definitely has made significant strides in obtaining samples to continue research efforts in finding early detection methods and treatments towards a cure for hepatobiliary cancers.
The collaboration map below shows the institutions across the nation who are working and collaborating together on several projects involving hepatobiliary cancers. The newest collaborator to join in as an HBTB Specimen/Data Collaborator site is Ohio State University. The various projects include genome wide association studies and retrospective studies wherein UCSF accesses the repository of specimens and data in the bank. This sharing of data and specimens allows UCSF, a regional cancer center along with these highly respected cancer hospitals and institutions to work together to advance hepatobiliary cancer research.
Early this year we told you about Lisa Simpson who lost her brother Nicky John to bile duct cancer 21 short days after diagnosis in April of 2014 and how she wanted to do something in his honor to raise awareness. Co-Founder Sue Acquisto of The Bili Project Foundation traveled to Illinois to meet Lisa, Ruth Kramp and their team of BILIever volunteers in person to thank them for the tremendous work they did in bringing awareness to Bile Duct Cancer. Sue received such a warm welcome upon arrival and was presented with a check in the amount of $15,375.59 which they raised from the two fundraisers organized earlier this year. Sue commented, “This group of volunteers who have had personal losses and challenges in their life are an inspiration, they worked together tirelessly with the support of their community businesses to raise this money in support of The Bili Project Foundation.” She expressed to this group of BILIevers, how grateful the foundation is and that every dollar they raised will go towards our continued efforts in raising awareness and finding a cure for this disease.
To see photos from the two fundraisers Lisa planned and organized click here.
The Bili Project Foundation is sad to make this update. It has been a rough two months!
We lost two amazing people to hepatobiliary cancer – Andrea Scott and Rick Babich. Both Andrea and Rick were Bili supporters and attended our fundraising Gala on August 3rd. They were both in good spirits and shared their story with us very candidly at the event.
Andrea was a mom, a daughter and a wife, who only wanted to set a good example for her boys. She was diagnosed with intrapathetic cholangiocarcinoma in April of 2013 and died in November 2014.
Rick was diagnosed with pancreatic cancer in May 2014. Rick shared that one day he just started to feel lethargic and had no desire to go to the gym. As the days went by, his energy level dropped even more and he started to lose his appetite. At that point he decided to check things out. The first doctor told him: “Your labs are fine, see you next year.” Dissatisfied, he consulted a second doctor. This doctor had him see a urologist to do an ultrasound and then followed up with a CT scan. The CT scan revealed an inoperable, untreatable, pancreatic cancer.
Both Rich and Andrea were friends of the foundation and we are deeply saddened by this loss.
Please join us in sending condolences to their families.
Our thoughts go out to Christopher who is battling Cholangiocarinoma. According to the Burbank Leader “Christopher is the first patient on record at Children’s Hospital Los Angeles — and among the youngest patients ever — to be diagnosed with a pure cholangiocarcinoma.”
The Bili Project Foundation will continue to make strides to promote research to identify diagnostic biomarkers and therapeutic targets in this complex and heterogeneous group of diseases.
Help us spread the word and to raise awareness. #thebiliproject
To read the story in its entirety Click HERE