My Introduction – Klatskin tumor

I have been reading the forum since March 2014 and find it has helped me and felt it time to join and share mine.

My journey started in the latter part of December 2013. I (male/55 yrs) took a shower and looked in the mirror and noticed my skin color was yellow. A friend stopped by and said I was jaundiced and should see the doctor. I called to make an appointment with my primary care physician only to discover he was out of the office and would not return until the beginning of January. Feeling it may not be appropriate to wait, I went to urgent care. Their initial thought was that I had hepatitis. Once the blood tests ruled this out, further tests were performed. Urgent care performed additional blood tests, an ultra sound and an additional imaging test. After reviewing the results they felt they were not equipped to help me and sent me to the emergency room at the hospital. Their thinking was that if I was admitted, they would be able to do tests more quickly than having me go through the normal routine of being referred to a specialist first. The ER doctor did not feel quite the same and called my primary care physician and referred me a Gastroenterologist and discharged me the same day.

I had an ERCP performed on December 27th. A blockage was discovered and a stent put into place to help drain the excess bile, my bilirubin had reached a level of 20. An MRI was performed on January 7th, an additional ERCP was performed on January 8th and an additional stent was inserted since my levels were not decreasing. During this period the diagnosis of Klatskin tumor was made. On January 10th, a bile drain was placed to help alleviate the level. The stents did not seem to be doing what they were intended to do. Good thing they put in the bile drain because shortly thereafter, I passed one of the stents in a bowel movement. Not something I would recommend. A little scary to have something pass through your body and you have no idea what it is.

I was referred to Dr Maria Stapfer (affiliated with USC) at Hoag Hospital in Newport Beach, CA to determine if a resection was possible. I met Dr Stapfer in January she felt I was a candidate for surgery but would have to wait until my bilirubin level was between 1 – 5. Surgery was scheduled for February 19th. Fortunately the levels dropped a week before the scheduled surgery.

Surgery was performed on February 19th consisting of:

Removal of the right side of the liver.
Partial resection of the vena cava
Removal of the gall bladder
Removal of the entire extrahepatic bile ductal system (re-routed to the intestines)
During the surgery an additional spot was noted in the small intestine. A partial resection of small intestine was performed.

Surgery lasted between 8 and 9 hours. Because of the complications during surgery, two additional surgeons assisted Dr Stapfer from her group. Dr Richard Selby and Dr Au Bui.

After allowing my body to heal from the surgery, I started 4 cycles of chemo in April. My cycles were every two weeks with Gemzar on day one and Oxaliplatin on day two. On day three a Nuelasta shot was administered to help increase the white blood cell count. June was a rest/recovery month. In July I had 6 weeks of radiation (Monday through Friday) with chemo (5 FU) during the first week and last week of radiation. I then had an additional rest/recovery period and in September I had two additional cycles of Gem/Ox. September 15th was my last day of treatments.

Other than the usual side effects that everyone reports, I experienced nothing out of the ordinary, although the side effects are anything but ordinary. What I discovered with my own effects and talking to people in the treatment centers, you rarely find someone who has identical side effects you have. There are effects here and there that are the same, but the degree is different with everyone. Can I say I have a new appreciation for the word “fatigue”? For me personally, I have never felt anything like that. I have heard the word used many times, but I was not prepared for what my body would feel like. A simple task of getting up from the sofa seemed monumental. I do not care to go through that ever again.

After surgery I noticed my mobility was not quite what it should be. I could pick up a pill but lifting my arm to place the pill in my mouth would only result in my arm just falling down. I had no control to make it do what I wanted. The Dr Stapfer originally thought it was due to my body being in one position for so long during surgery. When nothing changed after the period of time she thought would be sufficient, I met with other specialists and after tests with the neurologist he determined it was due to my immune system attacking my nerves. I lost all muscle tone and went from 215 lbs to 160. He said it could take anywhere from 6 to 15 months for my nerve damage to repair itself. The chemo/radiation did nothing to help this situation. During my recovery rest periods I could feel myself getting stronger and having more control and then I would be in for another cycle or having radiation. That seemed to set me back to the beginning.

At this point I am looking forward to gaining weight, strength and losing this chemo brain so I can go back to work. I know it will take time, but every day there is slight improvement and for that I am thankful.

A side note – Not sure if this had/has anything to do with this type of cancer but I had genetic testing for BRCA 2 gene. My one sibling had the test and discovered a mutation Q3066X (9424C>T). I had the test and have the same mutation. My other two siblings had the test and do not have the mutation. I do know the mutation will cause an increase in the possibility of having breast cancer, but not sure of CC. Both my mother and her father had breast cancer. This was the primary reason my sibling having the test in the first place.

From this point on, I move forward, for there is no other direction I see!