Hep B Blog

Journey to the Cure: What Does Liver Cancer Research Look Like? ft. Aejaz Sayeed, PhD

Welcome to “Journey to the Cure.” This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the fourth episode (part 2), Kristine Alarcon, MPH sits down with Aejaz Sayeed, PhD, Assistant Professor at the Baruch S. Blumberg Institute, to talk about his research in liver cancer. For any questions about hepatitis B, please email info@hepb.org.

Disclaimer: The information provided in this audio post is not intended to serve as medical advice of endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Edited by:
Kristine Alarcon, MPH

Special thanks:
Samantha Young

Music:
Modern – iMovie Library Collection

Script:

Welcome to “Journey to the Cure!” Every month, we’ll sit down with scientists from the Hepatitis B Foundationand the Baruch S. Blumberg Instituteto talk to you about hepatitis B and efforts to find a cure for hepatitis B. There’s still a long way to go, but we’re here to walk you through our journey.

Kristine Alarcon, MPH:
Can you tell me about your research?

Aejaz Sayeed, PhD:
That’s an interesting question. I’vespent a lot of time pursuing breast cancer and prostate cancer. I just started working on the liver cancer. There are millions of people who are pursuing cancer research, but the challenge is that we have done a lot of progress in some cancers, but some cancers, still, we do not have a handle on. For example, we have done a lot of progress in breast and prostate cancer. We have not done much in pancreatic and liver cancer. And, the five-year survival rates of breast and prostate and other cancers have drastically increased, but we have not done much of a progress in pancreatic or a specific form of brain cancer or pancreatic cancer or liver cancer. The problem, again, is that we’re not able to detect the disease at an early stage, and if we had a good set of biomarkers available, there’s a good opportunity, there’s a good chance that we should be able to control these diseases as well.

Kristine Alarcon, MPH:
What attracted you to studying liver cancer?

Aejaz Sayeed, PhD:
I’ve been working on breast cancer and prostate cancer, so in liver cancer, I want to use the tools and techniques, which I used in breast and prostate cancer. That’s why there’s that desire to use the similar strategies, which I used in breast and prostate cancer to discover and characterize markers. That’s why I’m still setting up collaborations with transplant surgeons because liver cancer is treated generally by either resecting the tumor or transplanting the liver. The liver is such an important organ that you cannot really take the liver away. You need the liver. Transplanting the liver is another strategy of treating these patients, so, yes, it is basically that desire that we have more biomarkers, and I can use the knowledge that I gained in breast and prostate to recapitulate the same kind of events, so that we can make a dent.

Kristine Alarcon, MPH:
Yeah; that’s so cool.

Aejaz Sayeed, PhD:
Thank you.

Kristine Alarcon, MPH:
Well, thank you for joining us on this episode of “Journey to the Cure.” Please join us next time for our next episode. Thank you for joining us!

Aejaz Sayeed, PhD:
Thank you!

Karen and Dave’s Story

One Couple’s Journey through Hepatitis B, Hepatitis D and Liver Cancer

“Dave knew he had hepatitis B for decades, but honestly, no one ever seemed concerned. His liver
enzymes were slightly elevated, so the doctor told him to just watch what he ate and drank. He didn’t
even insist on bi-yearly blood tests!

In 2016, Dave was scheduled for a routine colonoscopy. Because he’d been looking pale and sickly
around that time, I suggested they do a blood test first at his family doctor. His numbers were off the
chart. They sent us back for the colonoscopy and added an endoscopy too. They found four varices
(enlarged veins in the esophagus that can indicate serious liver disease). How did this happen?

This was when I started to get angry. The gastroenterologist called us in to discuss the results. He asked
if Dave knew he had hepatitis B. Dave said yes, knowing his drug use in his teens and early twenties was
likely the source. Dave never felt shame about it at all, and just accepted it as a path he took, and
thankfully came out of. After that conversation, the doctor slammed his chart shut and pushed it across
the desk. He said that Dave’s liver was so badly damaged that there was nothing he could do and to
‘come back in a year’. When we asked about his options for treatment for the varices and his hepatitis B,
he actually told me that no one would treat the varices unless they were bleeding! He also told us that
hepatitis B antivirals would “make things worse”. That didn’t make sense. We asked about a transplant.
He said there was ‘no way’ anyone would give him a new liver. He didn’t even let us know that there
were actual liver clinics for this very purpose. He sent Dave away to die, really.

Many months later, with much perseverance, we made it to Stanford, where he was immediately put on
entecavir to treat his hepatitis B and to hopefully relieve some of his liver damage. That doctor alerted
us that he should also be tested for hepatitis D, a coinfection of hepatitis B. “It won’t be good if you have
it.” He did.

Due to changes in our health insurance, we were sent to continue at the University of California San
Francisco Liver Center…they were our saving grace. They treated the varices right away and put him on
other medications to help his failing systems. His hepatitis B viral load was now undetectable, with
hepatitis D being the biggest concern. Dave tried interferon to treat the hepatitis D, but with no luck. His
only chance was a transplant, but even though he was doing poorly, his test results didn’t qualify him to
get on the transplant list right away. He had lots of ER visits – 210 office visits in 2017 alone. It was a
whirlwind. Dave hadn’t even driven in 2 ½ years. It was an enormous stress on me, too.

Dave developed liver cancer but wasn’t in good enough shape to go through treatment. As he got sicker,
he eventually qualified for two different                  
liver transplant waiting lists. Finally, on
Thanksgiving night 2017, we got the call
that a healthy liver was available, and we
took it.
Caregiving is a very tough road. Especially
when your person also has encephalopathy,
caused by years of liver damage – and Dave
had it really bad. The encephalopathy
caused mood swings, short-term memory
loss, hand tremors, low appetite. He could
be down-right nasty. At that time, we were
doing the 4 ½ hour drive to San Francisco
once or twice a week. It was stressful for
both of us – and he was really unaware of
the stress that was put on me. Between
driving, taking out the garbage, bills, our
construction business…you name it, I did it
all.

The first 3-4 months out of the transplant, people were telling him all that had gone on. Much to my
frustration, he didn’t believe any of it! Now, over 6 months post-transplant, little things are coming back
to him. I showed him about 2 dozen pictures of him during his journey, and he was shocked! He said he
thought he was fooling everyone into thinking he was well.

The hardest part of this journey was seeing Dave so sick at times. I spent a lot of time in my closet
crying. It was hard on our adult girls too, to see their dad so weak and disoriented. I had a lot of support
through our girls though, and my family, which made a world of a difference. My sister is also a retired
nurse, and she accompanied us to most of our visits. She was a helpful adviser, since his medications
always needed tweaking, and we were often on long calls with our care team, health insurance
company, and pharmacies.

The good we took away is his health! He still doesn’t feel it’s real. We went through so much, and are so
grateful to be on the other side.

Things I’ve learned:
• Get on a Facebook forum for liver transplant patients…they are a great resource and a wealth of
information from other patients.
• Take a third person with you to doctor visits and procedures. At times, I was so consumed with
my concern for Dave, it was easy for me to forget some of the things we discussed. My sister
would take notes, and we would review them after.
• Always get a second opinion if you don’t have a good feeling about your doctor. You will all
become a team, and it’s important to have a team you can trust.
• Get on the transplant list at multiple hospitals, their criteria for transplant varies!
• Have willing family members and friends get tested to see if they are donor matches. Usually the
recipient’s insurance will pay for the testing and survey if they are a match. My sister-in-law and
I were both tested but were not a match.
• Ask about organ swap programs. Apparently, my kidneys were in perfect health. My
hepatologist had me apply to the kidney donor program, in hopes that I may be able to donate
my kidney in exchange for a piece of someone’s liver for Dave.
• Dave was put on depression and anxiety medication early in the process. He was initially very
resistant, mostly because of the stigma. His doctors finally convinced him it would be very
helpful for his general mood…it was!
• I had to make several phone calls to his team without his knowing. Encephalopathy really makes
you confused, and in Dave’s case, grumpy. I asked the doctor to push for the depression and
anxiety medications, which she did. Also, he wouldn’t exercise or take short walks before
surgery, which she had asked him to, to better prepare for surgery. I made the phone call, and
at the next visit, she set him up with a Fitbit! It helped that the ‘suggestions’ came from his
doctor and not me!
• After the transplant, I was so surprised he wasn’t more ‘thankful’ …that he wasn’t in awe of
what we had all gone through for HIM! I got angry with him. I made a private call to our new
post-transplant team. She said depression right after is very common. The patient feels
overwhelmed, and sometimes not very thankful. It’s kind of a way to deny they were in trouble,
to deny that they needed help. That fits my man to a tee!
• I would strongly suggest lots of patience after the transplant. I wish our team would have told
me the possible mental-state Dave might be in. Don’t force them to be thankful. Don’t play the
‘remember when’ game, “remember when I drove you to the ER in the middle of the night?
Remember when they told us you had cancer? Remember when I tried to be your donor?”
Because a lot of it he doesn’t remember.
• Take pictures along the way, but don’t show them until at least 6 months out. I showed Dave
pictures right away, and they didn’t resonate. I just showed him them the other night…and he
was floored! He really ‘got it’. He’s been looking at things differently lately: he’s calmer and
more loving.
• I wish I had kept a journal. The ups and downs of this journey were sometimes excruciating, and
Dave wasn’t ‘present’ to understand it. Hire cleaning help if needed. Get family and friends to
take the patient to lesser important appointments. Don’t let household things pile up on you. Fix
the gutter. Repair the screen. Hire a gardener for a few hours. Ask family to set things up for
you. It’s amazing how in two years without Dave to physically help around the house, things
started to go south pretty quickly! Luckily, I dug in and kept up.

Quite the journey for sure. I feel blessed to be on this side of health!”

– Karen

Vlog: Advocacy Day on Capitol Hill

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator as she takes you behind the scenes of Advocacy Day – a day of speaking to Congress members and their staffers about hepatitis B.

In this episode, participants visit Capitol Hill to ask Congress to support funding for Hepatitis B research and to raise awareness on the topic. Advocacy Day takes place the day before the Hep B United Summit.

Vlog: Why is the Hep B United Summit Important?

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator to learn about why the annual Hep B United Summit is important!

In this episode, some of the Hep B United coalition partners explain why some of the leaders in the hepatitis B world gather in Washington D.C. each year. The Summit took place from July 24th – July 26th, 2018.

Newly Diagnosed with Hepatitis B? How Did I Get this? Learning the HBV Transmission Basics

If you have just been diagnosed with hepatitis B virus (HBV) then you need to understand how HBV is transmitted. This is important whether you have an acute or chronic infection.  You must understand you are infectious and can transmit the virus to others.

How is hepatitis B transmitted? Hepatitis B is transmitted through direct contact with blood and infected body fluids. This can happen through direct blood-to-blood contact, unprotected sex, unsterile needles, medical or dental equipment, and from a HBV infected mother to her baby at birth.  For kids, pediatric experts report that the fluid that oozes from cuts and open sores is also highly infectious, so keep those open cuts covered. HBV can also be transmitted inadvertently by the sharing of personal items such as razors, toothbrushes, nail clippers, body jewelry and other personal items that have small amounts of blood on them.

Hepatitis B is not transmitted casually by sneezing or coughing, shaking hands or sharing or preparing a meal.  In fact HBV is not contracted during most of life’s daily activities. You don’t need to keep cups and utensils separate. Hugging, or even kissing won’t cause infection unless there are bleeding gums or open sores during the exchange. It’s really all about trace amounts of infected blood, though the virus is in other bodily fluids in lower concentrations.  For example, it’s not about the saliva on the toothbrush that is a big concern, but rather the potential for trace amounts of blood that could be exchanged with a shared toothbrush.

How did I get this? If you have been diagnosed with hepatitis B virus you are likely racking your brain trying to figure out how you could have gotten HBV.  Some can immediately track their likely exposure to a recent event, or perhaps a time period in their life where they were more likely to have been exposed. They may fit into an at-risk category for hepatitis B due to lifestyle choices, country of origin, frequent travel and exposure in endemic areas of the world, or an unsafe blood transfusion, or medical or dental procedures performed without proper infection control. Some may never know how they were infected. What is important is that you are now aware.

Since HBV is a silent infection there can be years before it is detected.  Many individuals born in endemic parts of the globe find out later in life that they are hepatitis B positive, even though they have likely had HBV since birth or early-childhood. Children are especially vulnerable to chronic HBV. Greater than 90% of babies and up to 50% of young children infected with HBV will remain chronically infected, and most will have no symptoms.  Often it remains undetected until it is caught in routine blood work or later in life after there is liver inflammation or disease progression. In Asia, vertical transmission from mother to child is particularly common; whereas in Africa, horizontal transmission at a young age may be more likely.

Although not casually transmitted, there are inadvertent opportunities for exposure to hepatitis B. If you are from an area where HBV is very common, then the odds of exposure, transmission, and infection will be higher. Many are surprised when family is tested, and they learn hepatitis B appears to “run in their family”.  Hepatitis B is not genetic, but it is very easily passed from an HBsAg positive mom to her baby at birth. Hep B is a vaccine preventable disease, but not all moms living with the virus have access to the birth dose for their baby or able to complete the vaccine series, or they have a high viral load resulting in failure of HBV birth prophylaxis. The good news is that today we can prevent the transmission of hepatitis B to the next generation.

If you do, or have participated in high-risk activities at some point in your life, you are also at greater risk. This is not a time to judge or be judged.

Time to move forward. Unless your infection is acute and you can definitively identify your exposure, I would advise that you let it go and move forward. I spent a number of years wondering about the details of my daughter’s infection, but ultimately, it really didn’t matter. What is important is seeing a doctor to learn more about your infection, getting treatment if you need it, and preventing transmission to others.