Our Looseleaf Notebook

 


New video: My Toughest Marathon: A Runner’s Perspective on Cancer

Bill is the father of 6 and grandfather of 13.  He was diagnosed with cholangiocarcinoma in 2009.   In this inspirational video, 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.”

JOIN THE WEB-CHAT

  1. View the video: My Toughest Marathon: A Runner’s Perspective on Cancer
  2. Join our live conversation with Bill Merriam  on Monday, September 29 at 7:00 PM (ET).  Register Now!
  3. Ask Bill a question.  Submit your questions now then join the discussion  to hear Bill’s response.
Webinar:  Palliative Surgery for Patients with Cholangiocarcinoma

Webinar: Palliative Surgery for Patients with Cholangiocarcinoma

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:


Question #1:

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?

Answer #1:

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.


 

Question #2:

Are distal and extrahepatic cholangiocarcinoma the same?

Answer #2:

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.


 

Question #3:

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?

Answer #3:

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.

Free Webinar- Update on Cholangiocarcinoma

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!!!

http://cholangiocarcinoma.org/webinar-update-on-cholangiocarcinoma-what-we-have-learned-from-the-international-hepatobiliary-neoplasia-biorepository/

Webinar: Update on Cholangiocarcinoma – What we have learned from the International Hepatobiliary Neoplasia Biorepository

Webinar: Update on Cholangiocarcinoma – What we have learned from the International Hepatobiliary Neoplasia Biorepository

webinar-iconTopic:    “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

 

Support the 2014 Sonoma Bili Project Experience – August 2nd 2014

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 msearle@thebiliproject.org.

 

BEATING The Odds: Valarie Spiser-Albert

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.

http://www.ksat.com/news/cancer-patient-says-she-beat-odds-with-positive-attitude/25478826

Register for the C.U.R.E.

register-for-the-cure

 

The International Cholangiocarcinoma Patient Registry (ICPR) will open this Friday, June 27 at noon (Eastern).  The ICPR will advance Collaboration, Understanding, Research and Education for this rare disease.  If 100 people register in the first 60 hours, CCF will receive a $500 donation.

Get ready now to Register for the C.U.R.E.!

The 2014 Journey for Jo 5K Run/Walk & Kids Dash

Who was Jo Bryant?

Jo Bryant was a healthy, working teacher and a very involved mother and grandmother when she went to the doctor for back pain.  (She taught for 43 years, up until the day she was hospitalized.)  After tests and a biopsy, a week later, she was diagnosed with cholangiocarcinoma.  Her health quickly deteriorated.  She died three weeks after her diagnosis, on the way to a doctor appointment.  Her sudden death was so shocking to her family, friends, and students.  My sister and I (Julia & Kate) started the Jo Bryant Memorial Foundation shortly after her death to raise awareness and funds for CC.

Who, what, where, when & why the event is held

The Journey for Jo 5K Run/Walk & Kids Dash is held annually in Topeka, KS, where Jo lived and worked.  This year’s event was held on May 31, 2014 at Lake Shawnee.  The event is held to raise money and awareness for cholangiocarcinoma.  It’s also a means for supporting those that are fighting CC and those that have lost loved ones.  We’ve been surprised how many people have been impacted by this “rare” disease, just in NE Kansas.

How many years you have held the event?

2, with plans to continue annually

What is the total amount raised to-date?

$19,000

How many people participated in 2014?

Around 300

See their Facebook page is www.facebook.com/journeyforjo and their website is www.journeyforjo.com.

Reflections on Being a Dad: Bill Merriam

IMG_0442-2                  Mom's party 1-2

Forty years after becoming a father for the first time, six children and thirteen grandchildren later, the question has to be; how has my life been changed through all these years in the role of dad and grandpa?  The simple answer…I can’t possibly fathom how different my life would have been without the children.  Being a dad is fulfilling, meaningful, joyful, gratifying, significant, prideful, humanizing, and humbling.  Paradoxically, it is also frustrating, stressful, vexing, fearful, exasperating, exhausting, costly, and certainly not something to enter into lightly.  The decision to become a dad is forever…once a dad you can’t ever walk away and shed the responsibility…(well, perhaps in very short moments).  Children are not our possessions with built-in obsolescence.  When we make the commitment to becoming a dad, it is like no other commitment we will ever make in our life…we can’t negotiate, rationalize our way out of it, or walk away when the contract is finished and pick a new provider.  At times we don’t particular like their behaviors.  Conversely, they don’t always like our behaviors either.  But, we will always love them…no matter what.  The love and relationship with our children is unique and like no other in our life.

My commitment to being a father is deeply engrained within my soul.  My dad died suddenly when I was nine months old, leaving my mother widowed with three young children to deal with on her own.  I have known what it is to not have a dad in my life and will always have sadness about it, but I also developed distinctions from being raised by my mom and grandmother, which has contributed to my way of being a father.  We strive to be the perfect father, but we are human and we make mistakes.  We stumble, we cry, we have breakdowns at times, we experience consequences for our decisions, but we also get back up every morning, get the kids off to school and face the world again, a powerful metaphor for many circumstances in our life.  A true gift we can give our children is allowing them to be human.  Embracing my own “humanness” allowed me the empathy to embrace the humanness of my children.  We can be mentors, teachers, family leaders, influencers, “life coaches”, and providers of structural tools allowing them to make decisions, (with guidance and counsel), and then being responsible for the consequences of their decisions, both good and not so good sometimes.  They learn as much or more from our behaviors, as from what comes out of our mouths.  They are emotional sponges and emulators.  And what we put out there is reflected back.  They teach us and bring us humility.  Titles and successes in our careers dissolve in an instant when we walk through the door of our homes.  We “have” numerous things in our lives, but being a dad/father/grandfather is a “way of being”…it is cellular.  Perhaps it really should be “children’s day” in honor of our children.