My 41 year old husband was diagnosed with CC a year and a half ago. He has done very well until the last few weeks. His pain intensified and so his Fentanyl patch was increased to 175mcg. This makes him so sleepy he cannot keep his eyes open sometimes through dinner. I do not want him in pain but I want him to be able to engage somewhat with our family. Any suggestions??

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(2 replies, posted in Suggestions)

I am looking for help specifically on being a caregiver. I was hoping there was a "caregiver" tab where i could post questions that do not pertain to patients per se. Just a thought!

Dannigirl,
I am sorry to hear that you and your Mom are going through this. We have been a patient of Dr. El-Khouiery for a year now. He has been realistic about the challenges we face but also instills hope and is our biggest advocate. He has taken excellent care of my husband and is always in touch with the latest and greatest in cholangiocarcinoma research. I think your mom is in wonderful hands. Please let me know if you have any questions about our experience.

I wish you all of the best! We are up at USC almost weekly if you ever need to talk in person.

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(187 replies, posted in Hospitals)

My husbands oncologist is Dr. Anthony El-Khouiery at University of Southern California, Norris Cancer Center. He is one of a handful of oncologists whose area of research is CC. He travels the world going to meetings about Hepatobiliary tumors. He is also a really great guy and a straight shooter.

His surgeon was Dr. Yuri Genyk at University of Southern California. This man not only has miraculous hand, he is also a very dedicated doctor. I cannot say enough about what a great job he did in making my husband cancer free. He was in surgery for 17 hours!

Thank you to everyone for your words of encouragement. My husband continues to be cancer free. Unfortunately he has continued to have many complications from the surgery that got rid of the cancer. He developed multiple abscesses in his liver and then a benign stricture of the bile duct which required a biliary drain. He still has the drain (3 months now) and has had many infections which required severals rounds of iv antibiotics. He also has dumping syndrome for which we tried octreotide. After a few doses he developed nausea, a feeling of fullness and dizziness. This has persisted for 2 days such that he cannot get out of bed. I wondered if anybody else has had a similar experience with octreotide? It seems like a wonder drug but has not worked wonders for him thus far.

Thanks!

My husband was diagnosed with cholangiocarcinoma in April 2011. He had a lymph node dissection and ablation of 2 tumors at Memorial Sloan Kettering by Dr. William Jarnigan. He was a great doctor but since then we have hooked up with 2 doctors out in California that we feel are superb. He is followed by an oncologist, Dr. Anthony El-Khouieri, at University of Southern California Norris Cancer Center. Dr. El-Khouieri placed him on a regimen of cisplatin, gemcitabine and erbitux. He has had a remarkable response with what appears to be radiologically a remission and his CA 19-9 well down to the normal range. Because the original tumors were only ablated our oncologist felt we should see another surgeon for not only a resection but also to reconstruct the vessels into and out of the liver. We met with Dr. Yuri Genyk, also at University of Southern California. He performed a 17 hour surgery during which he removed the left lobe of the liver, the head of the pancreas, part of the stomach and also completely reconstructed the vessels going into and out of the liver. He has been incredibly hands on during the recovery and, as our oncologist tells us, performed a surgery that very few people can or are willing to do.  If you are on the west coast I highly recommend that you consider getting an opinion from these two doctors. Dr. El-Khouieri is also one of few oncologists who specialize in cholangiocarcinoma. He has given us real hope for a cure for my 40 year old husband, the father of my 3 young children!