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Category Archive for: ‘Personal Stories’
Find out how you can get involved!
February officially marks #Cholangiocarcinoma Awareness Month and a special day is coming for us to unite around the world to raise awareness!
Learn how you can get involved on February 12th – World Cholangiocarcinoma Awareness Day! Visit worldccaday.org for more information!
Michael Lax tells his bile duct cancer story of hope. In May 2014, Michael was diagnosed with Cholangiocarcinoma. After undergoing surgery, in January 2015, Michael was declared cancer free.
Back in February 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.
Motivated to make a difference and spread awareness of this silent, fast acting cancer, Lisa’s passion and persistence resulted in not one but two amazing events.
On March 7, 2015 she planned and organized an event that included appetizers, a raffle and all things green in honor of bile duct cancer awareness, raising $8,692.00.
On April 12, 2015, Lisa organized a 5K walk/run in Bliss Woods, Illinois with nearly 100 participants and raised over $5,000 for a grant total (between the two events) of nearly $14,000!
BILIevers like Lisa Simpson bring us one steps closer to finding advanced methods of early detection, treatments and cures for Hepatobiliary cancers. Amazing work Lisa!
Funds raised will go to support the continued efforts of our foundation.
Check out a few of the photos below from Lisa’s 5k walk/run in honor of her brother Nicky John.
Ms. Jessica Ivey originally published this post to a Facebook support group page in December of 2014 and sent it to The Bili Project Foundation earlier this month to share with its supporters. Since this was first posted, Jessica’s partner of 21 years passed away from BDC in February of 2015 at the age of 39 years old.
Let’s continue to spread the word about bile duct cancer and create awareness about this silent killer.
I’ve started this so many times and deleted for reasons I’m sure everyone in this group can understand. People tell me I need to talk to this out but THIS group has honestly been some of the best therapy. I must start off by saying you all fighting this are MY TRUE HEROES and whatever you do remain strong! I know there are many days you all live in pain mentally and physically, my hope for you all is a peace of mind & a break from all the pain.
So…here goes…our story: My husband was diagnosed with BDC in 2012 at 36 years old. This is after several bouts with severe stomach pain and months of ER visits. We started our journey in August of 2012 and was told his Gallbladder was failing and needed to be removed and something else fishy was going on but no one would just “say it.”
They did some exploratory scopes, placed some stints in for digestive “comfort” and still he remained in excruciating pain. We kept thinking “gosh, this sure is a lot for a malfunctioning GB!” Looking back i don’t know if it was an insurance game (Kaiser in GA is an obstacle to put it nicely) or if doctors had been truly puzzled. They just kept saying they didn’t want to just go in and do surgery w/ out knowing for sure what the something else fishy was.
This went on for 2 mos. until I refused to remove him from the hospital out of sheer stubbornness really. We had been back & forth so many times I was dizzy & he was becoming weaker, eating less, it was a hard time. I remember thinking of him as a fighter (he truly is the strongest man I know). I told him if they would “show him his opponent he will FIGHT this!”
10/02/12 they went in. The doctors performed a 7 hour surgery and confirmed bile duct cancer. This was the first time I had heard of such a thing. I remember thinking “who would tell my husband-how in the world was I supposed to tell him that, he’d be out of the surgery room soon.” For the first time I was panicked. Not to mention who would tell our boys 15 and 4 at the time? The doctor said the great news was when they got to the liver/the pancreas there was no sign of cancer. They reconstructed his BD, removed his GB and we went on about recovering and boy did he recover!
I still question why no chemo or radiation during that time. The Piedmont Hospital team here in Atlanta had been very good to us. So while we questioned it we didn’t push it. In layman’s terms the doctor said to us “there is nothing to do chemo or radiation on.” They couldn’t promise it wouldn’t come back but assured us there was a great hope. One thing I’ve learned about cancer is it’s full of surprises! They said my husband’s cancer most likely derived from a Choladocal (spell) Cyst that he was born with. They say children these days wouldn’t suffer this cause it would be detected in a prenatal ultrasound. They asked lots of questions about his diet and upbringing. He had some issues growing up but he had an old school grandma that kept his bowels moving and diet clean.
When I met him at 16 this man hardly ate fast food. As we grew older I realized that chicken and a hand full of veggies was about the scope of his diet-no dairy-nothing rich (I think he subconsciously learned what worked for him at a young age and it works for me because I’ve only had to master a few meals through the years!) His main concern was if it was hereditary and we learned most likely not! He was so relieved…still a father of 2 boys and at the end of the day this was the thing in the forefront of his mind, this man amazes me. He’s fighting for his life and still worried about his family. So now to present.
The cancer showed up again in October of 2013. It had metastasized to the lymph nodes. This was our first time seeing the oncologist although he was involved very much in my husband’s team during the 2012 surgery. He began Gemzar/Cisplatin and he did that until February 2014. Clean scans, we celebrated, June came and he says he knew it was coming back from the familiar pain in his stomach. We now know this pain is his lymph nodes swelling.
The doctor eventually told us that surgery didn’t appear to be an option, again do to the location of the swollen nodes (behind the abdominal wall). He had been in talks with the surgeon and they just didn’t see it beneficial. We moved on and he began his regiment of Xeloda and Oxiliplatin. He’s done that since June and hadn’t bounced back to his old self like he began to do the first regiment.
So now a couple of weeks ago they told us that the scans are showing his lymph nodes enlarging- although it seems we can almost tell them before they can us based on his symptoms. Our doctors at Piedmont are linked with MD Anderson. The specialist at MDA feel the next step is a phase one trial drug called Irinotecan. I wanted to know if any of you have any insight as to its side effects and success?
At this point he’s been on chemo more of the year than not. He’s sooooo strong and proud that I’m sure he wouldn’t even be comfortable with this post. Bottom line is I always questioned the no chemo and radiation decision after the 2012 surgery and I don’t want to look back a year from now and think something could’ve been done differently if I had of pushed a little harder.
As caregivers we become protective and we know them so well. I feel he’s weaker these days and he’ll most the pain meds they have him on I’d be loopy to say the least myself. I don’t want any door left open and stone unturned. Any insight would be great and prayers welcomed.
Love and peace to you all! One of my favorite pics of me & my Mr.! Literally right before this journey began in 2012. My high school sweetheart…my love!
– Jessica Ivey
My husband was a relatively healthy man. He had diabetes related to Agent Orange, but kept it managed. In November of 2009, he started having some stomach pain, loss of appetite and sporadic nausea. He was a referred to a gastroenterologist and was found to have ulcers and H Pylori. He was prescribed a round of antibiotics. On his follow up appointment with the gastroenterologist, he had lost some weight and he told the doctor, he still did not have an appetite. The doctor told him it was because of the ulcer and he should force himself to eat. In the middle of January of 2010, he started having stomach pain that radiated to his back. We took him to the ER at a VA hospital. They did some testing. I told the Dr. at the VA that I thought my husband looked yellow. The doctor told me it was the lighting in the ER. At that time, I don’t think his liver levels must have been out of range, or they should have caught it in the ER. They told him he must have pulled a muscle. During that time he still worked a full time job. The end of January, his urine looked dark. We called the VA nurse on call, explained the symptoms, and she told him it must have been something he ate as the reasoning for the dark urine. I knew something was wrong, so I told my husband I was going to call the private gastroenterologist who diagnosed his ulcers. The gastroenterologist then sent my husband for blood work. At that time the blood work came back with many of the levels being off. The doctor told me he had a feeling it was Cholangiocarcinoma, but wouldn’t know without further testing. My husband had a CAT scan that showed one thing and an MRI that showed something else. The doctor said the only way to know for sure was to have a PET scan. By the time we waited for all the testing to take place it was the end of February. The doctor called us the end of February and told us to see an oncologist. The oncologist diagnosed him with Stage IV Cholangiocarcinoma. He had his first Chemo on March 1, 2010. He progressively declined. He passed away on March 13, 2010. So from the first onset of symptoms, which was diagnosed as ulcers, it was only four months till he passed away.
My husband was a Vietnam Veteran. One of the causes of Cholangiocarcinoma is Dioxin, which is found in Agent Orange. Another cause is exposure to liver flukes, which are prevalent in Vietnam and surrounding areas. It can be caused by eating improperly cooked fish or poor sanitation methods when preparing food and cross contamination. The liver flukes do damage to the bile ducts. If one has a light case they might not have symptoms. After exposure, sometime, it takes twenty to thirty years or more before this cancer develops. This is happening to many of our Vietnam Veterans. In most of the cases, the diagnosis happened the same way as it did for my husband. The Veteran is relatively healthy, symptoms happen suddenly and within months the person dies.
The Bili Project Foundation has so many BILIevers who share the same passion we do for raising awareness of Cholangiocarcinoma (bile duct cancer) and the cancers that effect the Hepatobiliary system. One BILIever in particular, Lisa Simpson from Illinois who lost her brother Nicky John to Bile Duct cancer last year, reached out to our foundation over the summer and wanted to plan a fundraiser in his honor and that’s exactly what she did!
On April 12, 2015 Lisa will be lacing up her sneakers and beginning a 500 mile journey for Team Bili to raise money for The Bili Project Foundation.
She has decided to take on this challenge in honor of her brother Nicky John, a brave man with a big heart, who was given 21 short days to live after being diagnosed with Cholangiocarcinoma. Cholangiocarcinoma is part of the Hepatobiliary cancers and is a fast acting, silent, underfunded and understudied disease. Consequently, there were no treatment options for Nick.
Funds raised will go to support the continued efforts of our foundation. If you would like to participate, donate or have questions, please email firstname.lastname@example.org for more information.
The fundraiser is in Honor of Lisa’s brother Nicky John who died 21 days after diagnosis of bile duct cancer (He turned 50 years old during these 21 days)
Here is the fundraising website for the event (All proceeds will go to benefit The Bili Project Foundation)
The 2 day event will be held: March 7th & April 12th
• March 7, 2015: Appetizers, Raffle, etc.
• April 12, 2015: 5K walk/run in Bliss Woods