• Registered: Wed, 28 Sep 2011
  • Posts: 6

Topic: Recommended doctors on West Coast

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!

  • Registered: Fri, 12 May 2006
  • Posts: 8,175

Re: Recommended doctors on West Coast

Hello amangeloff and a very warm welcome to our site.  Thank you for sharing this incredible success story with us. In addition too a big congratulation is in order for searching out some of the finest physicians treating this disease.  Dr. El-Khouieri comes highly recommended and has published numerous papers on this disease.  He also is a wonderful human being.  Certainly no one would argue with you regarding the competency of Dr. Genyk as he has performed a surgery not reported on our site before. 
I wish for continued success and please, keep us posted on your husband

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Recommended doctors on West Coast

Dear Amangeloff, welcome to our wonderful family where you have the most courageous and caring people from all over the world.
First, CONGRATULATIONS on the successful surgery and then THANK-YOU to your husband for being a pioneer and to you for telling us this amazing story. I hope your husband is doing well now. 17 hours, wow! You are both amazing!
My wish is for his continued success and please do keep us posted, we do care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
  • Gavin
  • Moderator
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,841

Re: Recommended doctors on West Coast

Hi Amangeloff,

Welcome to the site. Sorry that you had to find us but I'm glad that you have joined us all. And thank you so much for sharing your husbands story with us all, that is quite a journey you both have been on. It is great to hear that your husband was able to have this surgery and he is in very good hands indeed. I hope that your husband continues to make great progress and please let us know how he gets on. We are all here for you.

My best wishes to you both,

Gavin

5 Reply by Jim Wilde (edited by Jim Wilde Thu, 29 Sep 2011 17:51:11)

  • From: Eastern Shore of Maryland
  • Registered: Fri, 15 Oct 2010
  • Posts: 380

Re: Recommended doctors on West Coast

amangeloff, we are blessed in this country with some extraordinary doctors and sounds like you have found several.  With cc, there aren't that many surgeons with both the experience and skills, plus the creativity to handle some very challenging patient situations.  I too was blessed with finding Dr. Tomoaki Kato at NY Presbyterian.  He's also a very creative and brave surgeon, who has taken some very difficult patient situations and achieved successful outcomes.  He took me as a patient, when it was unlikely any other surgeon would.

As you probably know by now, surgery is the only hope for a 'cure' with cc.  I hope your husband has many clean scans in his future.  Bless you both.

BTW, you may want to add your doctors to the "Hospitals" thread (link below my name), where we post our experiences with various doctors/hospitals.  There have been over 10,000 views of that thread ... one of our most visited places and a unique patient centric view of those doctors and hospitals in the cc context, a very unique resource.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm
  • Registered: Wed, 28 Sep 2011
  • Posts: 6

Re: Recommended doctors on West Coast

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!

  • eli
  • eli
  • Legend
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  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 563

Re: Recommended doctors on West Coast

My wife received an IV of octreotide for a few days after her Whipple surgery. Her surgeon prescribed octreotide to prevent a leak in the new pancreatic connection, a fairly common complication after Whipple.

My wife developed a terrible nausea in reaction to octreotide. She was turning inside out trying to throw up. Her stomach was empty after the surgery, so she couldn't really throw up anything but bile. She was on several medications at the time. It took us a while to figure out that octreotide was to blame. As soon as they stopped octreotide, the nausea was gone.

  • From: Costa Mesa
  • Registered: Tue, 28 Feb 2012
  • Posts: 7

Re: Recommended doctors on West Coast

I am relieved to come across this posting today.  My mom was recently diagnosed with cholangiocarcinoma in February.  She did not respond to her initial treatment at St. Jude so we were transferred to Dr. El-Khoueiry at USC.  He offered more treatment options so we're keeping our fingers crossed.  Hopefully treatment will begin next week.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Recommended doctors on West Coast

Hello Dannigirl and welcome to our remarkable family but sorry you had to join us.
Can you tell us a little more about your Mom's diagnosis, like where the CC is located and what has been done so far? You are a wonderful daughter to seek out this kind of help and to be with your Mom on this journey. We look forward to hearing more from you and please feel free to ask, vent or to advise others.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Wed, 28 Sep 2011
  • Posts: 6

Re: Recommended doctors on West Coast

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.

  • Registered: Fri, 12 May 2006
  • Posts: 8,175

Re: Recommended doctors on West Coast

Dannygirl...welcome.  I agree with amangeloff; you are in excellent hands with Dr. El-Khouiery.  He is an expert in his field and  has published numerous papers on the subject of cholangiocarcinoma.  He also is personable and likeable. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

12 Reply by marions (edited by marions Sat, 26 May 2012 00:30:59)

  • Registered: Fri, 12 May 2006
  • Posts: 8,175

Re: Recommended doctors on West Coast

Jim...I must have missed your posting.  Hope you are well.
Thanks for reminding me:  I guess it is time to revive the mentioned posting.  This thread has been viewed more than 21 thousand times and, here they say we are a "rare" cancer group.   Go figure. 

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Costa Mesa
  • Registered: Tue, 28 Feb 2012
  • Posts: 7

Re: Recommended doctors on West Coast

Hi Lainy,

Her cancer has spread from the bile ducts to both sides of the liver.  There is also a mass on the outside of her stomach.  She had 3 rounds of chemo at St. Jude (gemcitabine and cisplatin). She didn't respond to treatment and the tumors are growing.  So now we're at USC and hoping for the best.   If she's accepted to the clinical trial, she will start on Thursday.  My mom is 58 and has never had any health issues besides acid reflux.  It felt like we hit a brick wall going 90 when we received this diagnosis.  The shock has obviously worn off but it's still frustrating and scary. 

The worst part is that some have told her to stop chemo and start juicing 12 times a day.  I'm all for complimentary medicine but I most certainly feel that discontinuing chemo wouldn't be prudent.  She feels the same.  Juicing might be beneficial if you're healthy, but when you're diagnosed with stage 4 cancer and you don't have the luxury of time on your hands, chemo seems like the best option.  Someone please correct me if I'm wrong.  I don't have the answers, I'm just trying to help her make the best decisions. 

Thanks,
Daniela

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,231

Re: Recommended doctors on West Coast

Dear Daniela, I heartily agree with you. I am not a Doctor but my feelings are the same as yours. I did learn during my 6 years as a Caretaker for my husband that one should go with their gut feelings, they are usually right. I like to say I graduated with a degree in gut 101.  Don't let others interfere, if they are friends and family they do not know what you have already learned about this disease. I was very lucky as I think people were afraid to tell me what to do with Teddy. I listened to no one but Teddy, the Docs and myself. Sounds to me like you are doing all the right things so stay strong as that will get you through everything, too true. We are all here for you, you are NOT alone!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.