Re: Treatment Centers/Physicians

I wasn't officially 'diagnosed' until the pathology report of my removed organs was done... My ERCP was done in Sarasota by Dr. Scott Corbett and once the biopsy came back 'atypical suspicious fibrous cells', we started researching and ended up going to Sloan Kettering in NY.  My doctor who performed the liver resection is the Chief of Hepatobiliary Surgery, Dr. William Jarnagin, and he was fantastic. Very positive, and his staff that assisted him during surgery was great also. Dr. Matthew Weiss was a fellow under Dr. Jarnagin and he was excellent as well.

I have not started Chemotherapy yet (Friday the 13th is day 1) and it will be Gemzar initially with Cisplatin being added if I tolerate the Gemzar well.  My local oncologist in Sarasota, Dr. Richard Buck, is excellent. I haven't had an appointment that lasted less than a half an hour. He answers all of your questions, is very easy going, and very knowledgable as well. He has also been very willing to collaborate with my surgeon's oncology counterpart at Sloan Kettering, Dr. Yelena Janjigian. I actually sent an email to Dr. Javle at MD Anderson and within an hour, he answered me! His recommended treatment was very similar to what my current oncologists recommended as well.

Since CC is so rare and there are no specific adjuvant therapy protocols, the more the merrier if you ask me! In any event, I'm about 4 months post surgery, and my most recent CT on 12/27 was extremely clean. Only difference, the remaining piece of my liver grew down to the left so my anatomy is way off. No liver on my right side, small intestines are there instead (very loud after I eat or drink...). Liver is almost the same size as it was originally and all bloodwork showed liver function 100% normal. Let's see how I do with chemo...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Treatment Centers/Physicians

A good time to revive  this post.
Thanks a bunch,
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

Re: Treatment Centers/Physicians

My treatment is mainly at Sloane Kettering in New York City. My surgeon is Dr. Yuman Fong. He took out my gallbladder and cleaned up "stuff" and implanted the liver infusion pump in April 2011. My next surgery is probably mid or end of March 2012.
My main oncologist is Dr. Nancy Kemeny. We've had our share of problems with systemic chemo (can't take the oxaliplatin anymore) and the pump (had 3 embolizations before we could finally use it). Plus blood infections, etc. I haven't had chemo since Nov. 2011 and want 1 or 2 more before my surgery to try to shrink the tumor some more. It was still shrinking as of Dec. 30, 2011 so hopefully it's still getting smaller. I've received the gemcitabine/oxaliplatin cocktail plus FUDR thru the pump.
I also go to Princeton when I don't get chemo in the pump. My oncologist there is Dr. Richard Lee. The oncological staff there has been trained by Dr. Kemeny's staff in the pump and can remove liquids/add saline only. So I only go there when I'm not getting long term maintenance or chemo thru the pump.
My resection is not yet scheduled. I'm hoping for sometime in March. That gives me a bit over a month to prepare for it and get my parents up to PA so they can care for and worry about me up close and personal. I'm praying it's successful!
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

129 (edited by d517 Sat, 04 Feb 2012 18:07:18)

Re: Treatment Centers/Physicians

My husband had his liver resection at VCU Hospital in Richmond VA.  His Dr's name is Dr. Robert Fisher.  His surgery was on Aug 27th 2010, and he just had his most recent followup in Dec of 2011, and he is still cancer free.  Dr Fisher is a wonderful Dr.  If not for him, I would not have my husband today!  VCU has a Hospitality House for relatives to stay, while their loved ones are in the hospital.  One floor is totally dedicated to transplant families. Transportation to and from the hospital are available too.  They were there for me in every way, and the hospital staff took wonderful care of my husband.  I would recommend this Hospital to anyone suffering from liver disease.    smile

Re: Treatment Centers/Physicians

Thanks a bunch.

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

Re: Treatment Centers/Physicians

At times we have requests from our international members to help find a physician in their country. 

Greece:  Dr. Nomikos, MD, FACS, General Surgery, Surgical Oncology:
nomikosj@otenet.gr

Argentina:  Dr. Fernando J. Brancato
fjbrnachato@yahoo.com.ar

Philippines: Dr. Josefino C. Qua, MD. FACS, FPCS, FPSO
jequnmd@gmail.com

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

Re: Treatment Centers/Physicians

Thanks, Liz.

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

Re: Treatment Centers/Physicians

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!

134 (edited by marions Fri, 25 May 2012 23:32:54)

Re: Treatment Centers/Physicians

Jim made me do it.  Thought to revive this posting. 
I thank you in advance.

To our international friends I extend a special welcome.  Please, be so kind and help those patients living in your country find a physician/treatment center familiar with this cancer.

thanks a bunch, 

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

Re: Treatment Centers/Physicians

Following up on Amangeloff's post, including those she mentioned, there are a number of other excellent physicians at the University of Southern California who are highly experienced with this disease.

After UCLA had deemed me inoperable and put me on palliative care, we went to Dr. Rick Selby who heads the hepatobiliary surgery and abdominal organ transplant divisions at USC. I came to him very sick. I had an advanced Klatskin tumor, with multiple tumors in the liver, and several large lymphatic masses.  In a first surgery of 12 hours, he did an open cholecystectomy, central liver resection, partial hepatectomy, abdominal lymphadenectomy, and radical bile duct excision with a hepaticojejunostomy. In a second surgery, he did a left hepatic lobe resection. At this point and time, I am tumor free and healthy, something we couldn't imagine six months ago. Needless to say, Dr. Selby is our family hero.

For adjuvant therapy Dr. Selby referred me to Heinz-Josef Lenz, an oncologist at USC. Lenz has been mentioned numerous times on this site as someone with extensive experience with CC who is also on the leading edge of current research. His nurse practitioner, Taline Khoukaz deserves separate mention. She is simply exceptional. I am currently receiving chemotherapy and radiation under their care.

Bottom line: we feel we have been exceedingly well cared for at USC.

Re: Treatment Centers/Physicians

Hi Mparsons,

Many thanks for sharing this info here on this thread, it will be of use to many others. And yes, it does indeed sound like you have been exceeding well cared for at USC. Thanks again for this.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Treatment Centers/Physicians

South Korea
National Cancer Center, Korea
Dr. Joong-Won Park

Sees ten thousand CC patients annually

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

Re: Treatment Centers/Physicians

10,000 cases!!!  Wow.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Treatment Centers/Physicians

Randi... Dr. Park explained to me that South Korea has medical centers treating specific disease only (in this case: hepatobiliary cancers.)  I have been told that in
Thailand:  90% of liver tumors are cholangiocarcinomas; followed by China, and then Korea. What came to my attention also is that Korea presents with the highest rate of extrahepatic Cholangiocarcinoma. 
I also wanted to mention that the Cholangiocarcinoma Foundation encouraged research in Thailand via The Long Term International Fellowship Award.
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

Re: Treatment Centers/Physicians

Just what I thought but no proof, Marion. Teddy served in Korea 1951-1952 and his was extrahepatic.

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.

Re: Treatment Centers/Physicians

That is very interesting regarding Korea and ECC and I wonder if there is any specific research coming out of Korea or anywhere else that adresses this issue exactly? Very strange indeed.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

142 (edited by marions Wed, 06 Jun 2012 15:07:57)

Re: Treatment Centers/Physicians

Gavin...liver fluke infection caused by Clonorchis sinensis,  is thought to be responsible for the majority of CC cases in Korea.  Tailand is mainly affected by the Opisthorchis viverrini liver fluke.  Korean scientists provide large amounts of research to the medical community.
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

Re: Treatment Centers/Physicians

Thought to revive this thread again.
Thanks a bunch,
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

Re: Treatment Centers/Physicians

I think I posted on here, but not sure. We have added a few doctors so I think I will post them all again. Such a wonderful facility!!

My daughter, Lauren has CC. She is seen at University of Michigan Hospital.
Her doctors are:

Oncologist- Dr. Mark Zalupski
Surgeon-Dr. Chris Sonnenday
Radiology Oncologist- Dr. Mary Feng
Interventional Radiologist- Dr. Paula Novelli

Lauren has been on chemo since Sept. 2011. She had Theraspheres in May 2012. Feel free to e-mail me and ask any questions you like about the facility, doctors, or procedures.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Treatment Centers/Physicians

Thanks for the update, Pam.
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

Re: Treatment Centers/Physicians

My surgeon was Dr. John Cameron at Johns Hopkins Hospital in Baltimore, Maryland.  Excellent results with my Whipple.  I was out of the hospital in 6 days and on my way home to NY after 4 more days of rest in a hotel.  No drains, tubes or other stuff to deal with.

I'm undergoing chemo and radiation here at home in Rochester, NY through the Lipson Cancer Center at Rochester General Hospital.

Medical oncologist - John Phelan, MD
Radiation Oncologist - Meri Atanas, MD

Great care by very caring people.

Re: Treatment Centers/Physicians

Thank you for continuing this valuable thread.
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

Re: Treatment Centers/Physicians

Hi all,
This thread solely has been established by you, the members.  I thought it to be time to revive it. 

I would also like to encourage our international friends to post their relevant information.

Thanks and 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

Re: Treatment Centers/Physicians

My husband was diagnosed in March 2011.  His liver was resected at Duke by Dr, Bryan Clary.  His Oncologist at Duke is Dr. Herbert Hurwitz.  The Radiologist is Dr. Brian Czito.  The Interventional Radiologist is Dr, Suhocki.  All at Duke have been very caring.  He has received excellent care.  Our local Oncologist in Norfolk Virginia is Dr. Thomas Alberico-- who is wonderful!
Susan

Re: Treatment Centers/Physicians

Hi Susan,

Welcome to the site. Sorry that you had to find us all here but I'm glad that you've joined as you will get loads of support and help from everyone. Thats great to hear that your husband was ablew to have a resection and I hope that he is doing well. Thanks also very much for sharing his info on doctors and hospitals, and I know that it will be of use to others. Looking forward to hearing more from you as well.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.