In recognition of Rare Diseases Day today, Liver Cancer Connect is honored to feature an article by guest blogger, Gail Trecosta. Gail’s son is fighting a rare form of liver cancer.
We’ve all heard or seen heartbreaking stories of children with cancer. Ours began in October 2012. Our world turned upside down when our 13-year-old son was diagnosed with fibrolamellar hepatocellular carcinoma (FHC).
Continue reading "Fighting FHC: A Family’s Battle Against a Rare Liver Cancer"
Welcome to the newly launched blog from Liver Cancer Connect, the Hepatitis B Foundation’s dedicated program on liver cancer. The blog will focus on issues that affect families facing liver cancer.
On the recent World Cancer Day 2014, we ushered in the new year with both sobering news and some optimism.
First the sobering news. The American Cancer Society recently reported1 that the number of new cases of liver cancer and the number of deaths due to this disease continue to increase.
The rate of liver/bile duct cancer has risen by 3% to 4% per year and mortality by about 2% over the past 2 decades. In sharp contrast, the death rate for all cancers combined has been steadily declining over the same period and the number of new cases has decreased for most cancers.
Liver cancer is the fifth most common cancer in the world, and the third leading cause of cancer-related deaths. In fact, every 30 seconds, one person in the world dies of liver cancer.
Yet liver cancer is largely preventable!
Eliminating the main risk factors for liver cancer — chronic hepatitis B and C infections and fatty liver disease — can stop the development of liver cancer.
Chronic hepatitis B and C infections, which cause about 85% of liver cancers worldwide, are preventable and treatable. A safe vaccine against hepatitis B (the world’s first anti-cancer vaccine) has been available since 1986. And while a cure is not yet available, hepatitis B infections can be kept under control with effective treatments. There is no vaccine yet for hepatitis C, but it can be cured. And fatty liver disease can be prevented by maintaining a healthy weight and diet.
Equally important in preventing liver cancer are screening and surveillance, which help to find the cancer early. Screening is the first test that a person undergoes to detect either an increased risk for liver cancer or the actual presence of the cancer. Surveillance refers to the regular monitoring for liver cancer on a ~6-month basis.
Early detection increases the number of treatment options available and the chances of successful treatment. A targeted oral therapy called Nexavar (sorafenib) is currently approved for liver cancer in more than 70 countries, and researchers are looking for new ways to fight liver cancer with fewer side effects. Many of these potential new treatments are being studied in clinical trials.
So there is room for optimism. With greater public awareness of the risk factors and how to prevent them, and new therapies being developed, it is possible to reverse the bleak statistics for liver cancer.
With the rallying call, “Liver cancer is preventable!” Liver Cancer Connect is putting the spotlight on the prevention of liver cancer.
Our patient-focused website (www.livercancerconnect.org) explains the main risk factors for liver cancer and the importance of screening, surveillance, and early intervention. Over the next few months we will be expanding the resources on the website and bringing you more news and information on liver cancer. We encourage you to explore the website and send us your comments.
1. Siegel R, Ma J, Zou Z, Jemal A. Cancer Statistics, 2014. CA Cancer J Clin 2014 (epub ahead of print).
HBF is pleased to connect our blog readers to Christine Kukka’s monthly HBV Journal Review that she writes for the HBV Advocate. The journal presents the latest in hepatitis B research, treatment, and prevention from recent academic and medical journals. This month, the following topics are explored:
Posted in Science World Report, October 17, 2013
A recent study looks at a form of hepatitis B that is only found in men and may explain higher rates for certain types of cancer.
According to a team of researchers from Seoul National University in Korea, they identified a mutation from the hepatitis B virus that seems to appear only in men and may explain why HBV-infected males are roughly five times more likely than HBV-infected women to develop certain types of liver cancer. Continue reading "Hepatitis B Mutation Seen in Only Men, Increased Risk of Liver Cancer"
Coffee consumption reduces risk of hepatocellular carcinoma (HCC), the most common type of liver cancer, by about 40 percent, according to an up-to-date meta-analysis published in Clinical Gastroenterology and Hepatology, the official clinical practice journal of the American Gastroenterological Association. Further, some data indicate that three cups of coffee per day reduce liver cancer risk by more than 50 percent.
Posted in Science Daily, October 22, 2013
Mark you calendars! Join Hep B United,CDC Division of Viral Hepatitis , HBF, AAPCHO and CDC NPIN for a Twitter Chat on Tuesday, November 19th, 3pm EST to discuss the Know Hepatitis B campaign and what Hep B United, partners and coalition members are doing to raise awareness and increase hepatitis B testing and vaccination among Asian Americans and Pacific Islanders (AAPIs). Hepatitis B is the leading cause of liver cancer and a major health disparity among AAPIs who are disproportionately impacted by HBV. Continue reading "Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!"
Could an inexpensive test, used in conjunction with current, traditional HCC testing help reveal one’s liver cancer risk? Research for the V-chip is described in an article published in this week’s Health Canal.
Scientists from the Houston Methodist Research Institute and the University of Texas M.D. Anderson Cancer Center will receive about $2.1 million from the National Cancer Institute to learn whether a small, low-cost device can help assess a person’s risk of developing a common form of liver cancer.
The four-year project is based on technology previously developed by Houston Methodist nanomedicine faculty member Lidong Qin, Ph.D., who is the new project’s principal investigator. Qin’s “V-Chip,” or volumetric bar-chart chip, will be used to detect biomarkers for hepatocellular carcinoma (HCC), the most common cause of liver cancer. The device only requires a drop of blood from a finger prick.
The V-Chip allows the testing of up to 50 different molecules in a blood or urine sample.
“Most of the burden of HCC is borne by people who have low income, with the highest incidence rates reported in regions of the world where infection with hepatitis B virus is endemic,” Qin said. “Developing an accurate and low-cost technology that assesses the risk of cancer could make a big difference to people who ordinarily can’t afford expensive tests.”
M.D. Anderson Department of Epidemiology Chair Xifeng Wu is the project’s co-principal investigator.
Qin and Wu will see whether the V-Chip accurately detects HCC biomarkers. The researchers will also determine which combination of these biomarkers proves most predictive of disease.
Among the biomarkers the researchers will look at are antigens of hepatitis viruses B and C, aflatoxin (a fungal toxin that at high doses is associated with cancer risk), and metabolic indicators of alcohol consumption, obesity, diabetes, and iron overdose.
Tests of the V-chip will not replace traditional testing methods, but rather be carried out in tandem so that patients’ care cannot be adversely affected.
Hepatocellular carcinoma is believed to be the third-highest cause of cancer death worldwide and the ninth leading cause of cancer death in the U.S. It is most commonly caused by a past infection of hepatitis viruses B or C (HBV or HCV) and cirrhosis of the liver caused by alcohol abuse or other toxic damage.
Please visit Health News, Health Canal for more information
This weeks’ blog features one family’s experience in dealing with a rare type of cancer with the goal of bringing hope and inspiring those who may be dealing with the challenge of living with liver cancer.
In November 2005, my wife Heather and I learned something that changed our lives forever. It was the day that she was diagnosed with cancer. She had malignant pleural mesothelioma. I knew that our lives were about to change considerably, and right away I had to step into the role of caregiver for my wife. Our daughter Lily had just come in to the world three months prior, and our excitement over being new parents quickly dissolved into fear of what the future could bring. I didn’t know why we were dealt such a hand, but I knew that we had to make it through.
I started my life as a caregiver the moment that I heard Heather had cancer. We went to the doctor together that day. Sitting there, feeling trapped inside my emotions, we were faced with some difficult choices. The doctor gave us a few options for treatment nearby, like the regional hospital or university hospital, but neither of these had a program for mesothelioma. We were told about a specialist in Boston named Dr. David Sugarbaker, who was renowned for his work with mesothelioma patients. It didn’t take me any time to say, “Get us to Boston!” I knew that if my wife had any chance of surviving, she would need the best care she could possibly get.
We spent some time after that trying to get our life together. We had to make some tough decisions about child care, paying bills and work. Heather could no longer work, and I had to scale back to part time in order to be there to care for her and Lily. The worst times were being stuck at my job, thinking of my wife and the baby, and knowing that I wasn’t where I needed to be and yet I was where I had to be. I kept having these terrifying moments of doubt, where I would think of being alone and widowed with a baby to raise on my own. It was all I could do to keep it together most days.
Help came when we needed it the most through my wife’s family. Heather’s parents were extremely giving during our time of need. They provided a place for her to live after her surgery in Boston but they also provided for Lily’s child care. They even helped with medical bills. Friends were also there for us during our rough time. I will never forget the help from these people and how generous they were. It truly saved my family from desperate hardship. I will always remember that kindness.
My strongest advice to anyone in this situation is to accept every offer of help that comes your way. I learned the hard way that there is no room for pride in a battle with cancer. Even the smallest offer of help can be a huge weight off your shoulders, and at the very least will remind you that you are not alone in the fight.
Furthermore, as a caregiver you must remember to take care of yourself as well. Allow yourself to have bad days, this is inevitable and even necessary, but always remember to never, ever give up hope for a better tomorrow.
Heather would undergo intense treatment for mesothelioma over the following months, and against all odds she would eventually beat her cancer. It has been over seven years since her diagnosis, and she remains happy and healthy to this day. We hope that by sharing our story, we can help inspire others currently battling through cancer today.
Cameron Von St. James
The Hepatitis B Foundation’s Liver Cancer Webinar Series continues Wednesday, April 3rd. HBF’s first webinar was overwhelmingly successful, so we hope you’ll join us next week for “Liver Cancer and Hepatitis C: What You Need to Know”, presented by leading hepatitis C expert, Douglas LaBrecque, MD.
Dr. LaBrecque is the Professor of Medicine and Director of the Liver Service at the University of Iowa. He also served as Chief of GI and Hepatology at the Iowa City VA Hospital for 19 years. He has conducted extensive research on the development and treatment of hepatitis C, hepatitis B, and other liver diseases, including liver transplantation with more than 100 peer-reviewed manuscripts, three books, 22 book chapters and over 150 abstracts.
Liver cancer is the third leading cause of cancer-related deaths and the seventh most common cancer worldwide. But the major causes of liver cancer— such as chronic hepatitis B or hepatitis C, and cirrhosis— are largely preventable. And treatments for liver cancer are available.
Join The Hepatitis B Foundation’s webinar series to learn about the risk factors for liver cancer and the importance of liver cancer screening and surveillance. The expert presenters will describe currently available treatment options and clinical trials. These webinars are provided free of charge to help educate and raise liver cancer awareness.
Liver Cancer and Hepatitis C: What You Need to Know webinar details:
Presented by: Dr. Douglas LaBrecque
Date: Wednesday, April 3, 2013
Time: 3 pmEST; 12 pmPST
Click here to register
Download the March 6th Webinar and listen to Hepatitis B and Liver Cancer: What You Need to Know, by Dr. Robert Gish.
For additional accurate, easy-to-understand information on liver cancer, visit the Hepatitis B Foundation’s dedicated website, www.LiverCancerConnect.org.
Yesterday the Hepatitis B Foundation participated in the American Association for the Study of Liver Diseases (AASLD) annual “Liver Capitol Hill Day” visits. This is a great opportunity to get in front of state Senators and Congressmen in order to make requests known to them. It is also an opportunity to educate. As a constituent, your state representatives are interested in what you have to say. The “Asks” for the day were to support funding for liver related research, prevention strategies, and support of liver patient access to quality medical care. Specifically, we were asking for NIH funding growth, rather than the 20% cut over the last decade, along with support of government agencies such as the CDC Division of Viral Hepatitis, and the delivery of health care systems and payment policies for patients living with liver diseases. Prevention is also critical with specific asks for new, one-time hepatitis C testing and screening for hepatitis B for at-risk patients. As we are all aware, budgets are tight and we will all soon feel the effects of the Sequester. Research programs may no longer be funded, or severely cut, public health agencies and programs will be cut, and patients who are currently receiving medical assistance will suffer. For treated patients with HBV, it is essential nothing interrupts the daily antiviral use, and of course HBV and liver cancer prevention through screening, vaccination and surveillance is both necessary and cost effective in the long run.
Due to the Sequester, the day started in a panic for many Hill visitors. I was fortunate to arrive early – a good thing since I waited in a long security line for 45 minutes that wrapped around the building. As Maryland residents, Dave Li and I met with staff from both Senator Ben Cardin’s (D) and Senator Barbara Mikulski’s (D) offices. Senator Mikulski was recently appointed the Chairperson of the U.S. Senate Appropriations Committee. This means she will have a great deal of influence on budget and spending decisions. We were told that due to the Sequester, the Continuing Resolution (CR) will remain in place for the remainder of the 2013, but Senator Mikulski is optimistic that the FY14 and future funding for the NIH, specifically, will be maintained. As a Maryland Senator, this is extremely important to Sen. Mikulski on many fronts. Senator Cardin has been making visits to agencies in MD, including the NIH, and researchers are frustrated they are unable to do their work. Both Senator Cardin and Senator Mikulski support federal agencies (such as the CDC, Division of Viral Hepatitis, Public Health Agency etc.) and initiatives that provide care and services to meet the health care needs of Marylanders. Fortunately this supports the Health and U.S. Health and Human Services (HHS) Viral Hepatitis Action Plan initiatives, since both Senators are supportive of prevention and surveillance initiatives. Dave and I walked out of our Senate meeting feeling pretty good.
Unfortunately, the outlook was not so optimistic on the House side. We visited staffers from Congressman Chris Van Hollen and Congressman Elijah Cummings offices. Although they are working on budgets, they are meeting with opposition and resigned to deep cuts in their supported programs. Congressman Cumming’s staffer was pleased to hear an optimistic viewpoint from Mikulski’s office. Although clearly mixed signals from our House and Senate meetings, we can only hope that Congress will eventually work together and move forward with continued funding of agencies and programs that support those living with liver disease.
Please remember that your state Senators and Representatives have been voted to serve YOU. It is imperative that your voice be heard. If you don’t let them know what is important to you, important programs and agencies will be drastically cut. You do not need to be a political machine to participate. Don’t know your Representative? Find your Rep. on-line by putting in your zip code or state to learn who you need to contact. Find your Senator, Governor and Congressmen here. Call the Capitol switchboard’s toll free number at 1-888-876-6242 , or send an email or letter with your asks, and your personal stories. Be sure your message is clear and concise, and personalize it if you can. You can visit your Representative or Senator when you are visiting Washington, D. C., or in the local, state office. Let your voice be heard – especially during this very difficult time.
