johnny ur

Update December 27th - Back in the Jerz edition.

Made it home to NJ yesterday. Feeling much better without the swollen gallbladder. Celebrated Christmas with the family last night.

On Monday, I'm going to start making phone calls to find a place to have treatment with Theraspheres. According to Dr. Roberts at Mayo, only five centers in the country are doing this trial for liver metasteses:

• Illinois Northwestern, Chicago, IL
• Mayo Clinic, Rochester, MN
• Johns Hopkins, Baltimore, MD
• New York Albany Medical Center
• Wisconsin Medical College, Milwaukee, WI

These may or may not be current. If they are, Johns Hopkins would be the closest choice. I'm going to make the phone calls to confirm and also to check into Robert Wood Johnson in New Brunswick, NJ - which offers SIRspheres. Seems like Memorial Sloan Kettering won't have Theraspheres until the summer or fall of next year (slackers). Regardless, I might be able to have my regular scans and endoscopes done at Robert Wood Johnson, and go to Johns Hopkins for the special Theraspheres treatment. That would definitely help with decreasing travel inconvenience.

Thanks to everyone who's sent thoughts, prayers, books, DVDs and other gifts. Everything is greatly appreciated and I'm humbled by the unexpected generosity of so many people. It reminds me that I'm not fighting this alone.

Stent This - Xmas Eve Edition

6:30 AM is too early to schedule an ERCP. But I guess since it's Christmas Eve, the doctors wanted to get in and get done and go home. So they IV'ed me up, and brought me into the procedure room. They had me lie on my stomach, filled me with the good juice (sedation) and away I went into dreamland. I woke up in a different room, and as my mom explained, I was also in a different building. Before I came to, apparently the drove me to a different hospital to recover.

During my ERCP, the doctors passed a endoscope through my mouth, esophagus, stomach and large intestine. Then the scope went into the duct that connects to my gall bladder. I'm fascinated how they knew where to connect to that duct. I imagine the scope headed down through the body and a large green sign that says "Gall Bladder Exit 2 - 50 cm - Keep Right".

I woke up with a sore throat and a sore abdomen. But apparently the procedure was successful and my bile duct that was constricted is now open (through the placement of a plastic stent into the duct) allowing bile to flow from my gall bladder to my intestine. This was the main cause of discomfort for me, so hopefully now, I will have a better appetite, which should equal more energy, and maybe I can put some weight back on. I'm down to 155lbs - from 175 a year ago, and 165 a few months ago.

Assuming no complications, I should leave here tomorrow and be able to catch our flight home on Friday evening back to NJ. 

Update December 23rd

Today was a difficult day emotionally as I learned the results of my PET scan from the transplant team. First, it looks like the cancer is not confined to my liver. This means that surgery and transplant are probably not options immediately and makes me think that systemic chemotherapy is more likely to be used.

Second, I might have a bladder infection and dilated veins in my esophagus. Update: Dr. Grothey laughed as I told him this - information given to me by the transplant doctors. He smiled, saying no they are completely wrong. He doesn't know what he is talking about. That made me feel better.

It looks like I'm going to leave here on Friday to head back to NJ. Likely whatever treatment I decide to proceed with will be continued at Memorial Sloan-Kettering in NYC. It's closer to home and more accessible. I'm leaning towards the Theraspheres over chemo therapy as they can concentrate radiation onto the tumor rather than drugs that will breakdown my entire body. It is also the treatment that Dr. Roberts recommended. I'm going to do some more research tonight and make my decision tomorrow.

The Rest of My Life - The Unpredictable Edition

My life has changed. It is very difficult for me to keep everyone I know updated daily, so I plan to use my journal to track the day to day changes.

Here's the short version: I've been diagnosed with Primary Sclerosing Cholangitis (PSC) and Cholangiocarcinoma (CC) - a form of cancer that affects the liver and bile ducts.

Here's the long version: September of 2008, I went for my yearly colonoscopy - a checkup on my Ulcerative Colitis which I've had since 1996. Things seemed normal, but my blood test results came back with elevated levels of Alkaline Phosphatase - a liver enzyme. Later that month, I went to France to live with my girlfriend, Sarah while she taught english there.

During my time in France, I felt very fatigued and started developing abdominal pain in my right side. I tried to dismiss the pain with many excuses (my colitis, jetlag, change in diet, side effect of medication, or anything else). Finally after two months, I decided to see a doctor in France. The doctor sent me to a local hospital where I was diagnosed with PSC - a disease of the bile ducts and liver. The doctor also recommend that I go to a large hospital in Bordeaux for a liver biopsy, a common procedure after being diagnosed with PSC.

At the hospital in Bordeaux, they biopsied my liver and a mass on my liver that was found in a CT scan. It turned out to be cholangiocarcinoma. I decided to come back to the United States to have the diagnosis confirmed and to seek treatment here.

Fast forward two weeks, and here I am sitting in a hotel in Rochester, Minnesota, five minutes walking distance to the Mayo Clinic - one of the most-renowned cancer centers in the United States. I've been here for about a week. Here's what's gone down so far:
- Had a CT scan and blood tests.
- Met with Medical Oncologist, Axel Grothey who is leading my case. I asked about numerous treatment options including transplant, Cyberknife, radiation and chemotherapy. Dr. Grothey set me up with consultations with a number of other specialists.
- Met with Gastroenterologist and Hepatologist, Dr. Lewis Roberts. Dr. Roberts spoke about many of the possible treatments including Theraspheres, Photo Dynamic Therapy, and chemo.
- Had a PET scan. Unlike a CT scan, during a PET scan you are injected with radioactive glucose. Cancer cells feed off of sugar and they attract sugar and glucose, so a PET scan can give a much clearer reading of the locations of cancer cells and tumors.
- Met with the liver transplant team which confirmed what Dr. Grothey thought - I was not a candidate for transplant because my main tumor extends beyond the right lobe to the left lobe of the liver and there are also other spots in my abdomen because the tumor has reached the lymph nodes. This is not good news.

Here's what's to come:

Today, meet with Dr. Grothey again along with a surgeon, Dr. John Donohue.
Tomorrow, an ERCP to place stents in my bile ducts to open up a pathway for my gall bladder to drain. The main cause of my discomfort is my swollen gallbladder which is filled with bile that can't drain because the duct is blocked by a tumor. Another stent could be placed in a duct over the main tumor. This would be a preemptive strike to keep that duct from closing.