Re: Treatment Centers/Physicians

In Nov 2009, at age 76, my mother, a generally healthy person, was found to have about 20 blastic tumors up and down her spine during an MRI to see why her neck was hurting her so badly.
More imaging resulted in the finding of a mass on her central bile duct and gall bladder.
Her local internist referred her locally to Dr Frederick M. Weeks of Vero Beach, FL.
An endoscopic brushing inside the bile duct and a needle biopsy if a bone tumor failed in a local facility.
My mother was able to get an appointment 4 weeks later to see Dr Manish Shah in the GI Dept of Sloan-Kettering in NYC, at the recommendation of Dr Weeks who knew that this was a cancer beyond his expertise, usually incurable and virtually untreatable. The questions were: is this gall bladder/ bile duct cancer, and is the cancer the same in the bones? Based on the answers, we would get a treatment plan from Dr Shah.
My mother had two needle biopsies (one around the gall bladder and ducts and one in the spine) in two depts a week apart two weeks after her initial consultation- Sloan Kettering is a very busy place and it is very hard to get appointments. The conclusion was "probably" cholangiocarcinoma, and bone mets were "likely" from the same cancer.
Dr Shah agreed with my mother's desire to be treated in Vero Beach while living at home. He came up with a treatment plan and forwarded it to Dr Weeks, who is now administering chemo. She started her chemo (finally!) on Dec 24, 2009.
He refused to offer any direction with changes in her diet or additional supplements to enhance her chances of getting the tumors and supporting her immune system. "Don't make any big changes. Just be healthy." Hard for us all to hear as we were reading the Anti-Cancer Diet book, and take numerous supplements ourselves...

There is no continued conversation between the two doctors. Both are very pessimistic ("realistic", in their eyes). They just see it as a matter of time, and even questioned whether she should go on the second more toxic chemo (gem-cis).
It now now four months since her diagnosis.
She is feeling quite normal and has been on the more toxic regimen for about a month.
We are grateful for the good quality of her life. But it is as if she really is not that sick and never has been. But no other treatments seem to be available due to the multiplying bone mets. All the doctors say is that there is nothing else they can do, and that we need to get a grip.

I and my father have TORN UP THE INTERNET to find more treatments. We even asked if Dr Shah if she should add something like an anti-angiogenetic or some other third chemical (directed to a specific pathway of cancer) to her chemo cocktail. I sent him a long list based on cc trials and pancreatic cancer treatments, which seem to be the basis for many cholangio therapies. He just wrote them off, saying that they cause too many side-effects. I did not understand that- I thought targeted therapies caused fewer side-effects than chemo. 

My father is horrified at all this. But it is very hard to believe she is dying. We feel bad just "giving up".

Hope this helps others in some way.
Take care, everyone.
Thank you.

Re: Treatment Centers/Physicians

I noticed it has been over 6 months since anyone has posted on this site but I think it has very worthwhile information.  I would like to add UCSF Medical Center for those who are in California.  I called for an appointment with Dr. Venook but since I could not get in to see him for two weeks, I made an appointment with his "understudy".  She take all of his "overflow" patients.
I had an appointment with Dr. Robin Kelley, oncologist.  I went to her as a second opinion after my first round of chemo and radiation.  But she will be my doctor when I have to start chemo, again.

Re: Treatment Centers/Physicians

I can't remember anyone being treated in New Zealand for CC so this came up when I was googling and thought I would flag it up here.

Dr Rees Cameron, GI Wellington Hospital, New Zealand.

http://www.stuff.co.nz/dominion-post/jo … -fascinate

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

Hello, I had all my treatments at MD Anderson in Houston, TX. Excellent cancer centerl! My doctors at the time:

Dr. Nicolas Vauthey - surgical oncology
Dr. Melanie Thomas - medical oncology
Dr. Ahmed Kaseb - medical oncology
Dr. Christopher Crane - radiation oncology

MD Anderson Cancer Center: http://www.mdanderson.org/

Re: Treatment Centers/Physicians

For our UK members.  I was treated at St. James Hospital in Leeds for ampullary cholangiocarcinoma and had the whipples operation by Keyhole (laparoscopic surgery).  Had the operation April 30th 2009, so I have passed my one year point.

My surgeon was Mr K Menon. He was the first surgeon in the UK to do Whipples by Keyhole.   I highly recommend him, not only for his skill with the keyhole resection, but also his very kind and caring manner.  He is truly a wonderful and compassionate man, and he treats people from all over the UK, on referral from other hospitals.

31 (edited by Linda Z Tue, 08 Jun 2010 12:34:27)

Re: Treatment Centers/Physicians

I have been a member for a few months and I just saw this so I'm sure that other new members have missed it too.  Hope they see it now and add their info.-----

The surgeon that did my Hepatectomy and Roux en Y is Dr. Giuliano Testa at the University of Chicago Medical Center.         
          His specialty is living-donor liver transplant however, not a specialist
          in Cholangiocarcinoma.  That said, he has a tremendous attitude and
          confidence, and great personality.  His support staff (in particular his
          nurse/coordinator) is by far the best.  It helps when you have
          difficulities and need answers.  She was always available and could
          get your answers for you either by talking to the drs. or asking them
          to call you.
          http://www.uchospitals.edu/physicians/g … testa.html

My Oncologist at the Univ. of Chgo. is Dr. Blaise Polite
         http://www.uchospitals.edu/physicians/blase-polite.html

My Radiation Oncologist at the Univ. of Chgo. is Dr. Stanley Liauw
         http://www.uchospitals.edu/physicians/s … liauw.html

Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Treatment Centers/Physicians

Hi...
I first saw a hepatologist who is brilliant (and also told me my tumor was resectable):
Dr. Gores, Mayo Clinic in Rochester, MN 
My resection was done by an equally wonderful surgeon:
Dr. David Nagorney, Mayo Clinic in Rochester 
and I am now scheduled to see an oncologist who I hope is as good as my other two doctors:
Dr. Richard Kim, Moffitt Cancer Center in Tampa, FL

Dianne

Re: Treatment Centers/Physicians

Great Rad Man!

Dr. Mark Sands, Interventional Radiology, Cleveland Clinic, Cleveland, Ohio
216-444-5616, sandsm@ccf.org

Betsy

Re: Treatment Centers/Physicians

Hello All,
I am sending all the info I have on myself to Dr. Pawlik at Johns Hopkins-thanks again to all of you! Sincerely, Johanna

Re: Treatment Centers/Physicians

My Mom was treated at Duke University Medical Center

Her oncologist was Dr. Michael Morse.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Treatment Centers/Physicians

I am new to the board but wanted to add a few fabulous docs at Barnes (St. Louis, Missouri).

Dr. David Linehan-Chief of hepatobiliary-pancreatic and GI surgery-THE best!
He did three surgeries, in three days, on my dad and two started before dawn! I think he may have spent more time than his residents and fellows(later to be known as an entourage larger than Lady Gaga's), in the ICU, that first week after my dad's surgery.

Dr. Benjamin Tan-Oncologist/Hematologist; Very conservative in treatment but very knowledgeable and caring. He has a star of a right hand wo(man)...his main nurse and our life line, Joan James.

Dr. Ida Fox-Not many of you will need her, but she is a plastic and reconstructive surgeon and AMAZING!!! My dad is a big guy (6'2", 250+pre-surgery) and his entire abdomen was left open after complications of the Whipple (x3). She did an amazing job and had a beautiful pencil line scar...before he had an awful encounter with MRSA...but not Dr. Fox's fault.

Dr. James Duncan-Interventional Radiology-I have had less face time with him, but he has been there through it all.

Dr. Jeffrey Crippin-Transplant surgeon...He turned us down, but he is one of the best!

If anyone has questions, feel free to email me!

Stacey

Re: Treatment Centers/Physicians

Again for UK members, my dad was diagnosed at Bradford Royal Infirmary and swiftly referred to Professor Lodge's team at St James in Leeds.
Mr Smith and Mr Menon are both highly recommended for the Whipple; Prof Lodge does the liver transplants. 

We can not speak highly enough of Mr Menon - he did a wonderful job on my dad, hardly any complications to speak of and visited him every day for at least a week.  He keeps him under surgical observation every 3 months even though my dad is also under oncology as 'he's one of our success stories'.

Mr D Swinton is my dad's oncologist, and again is highly recommended.  He really knows his stuff - with a very calm manner.

Re: Treatment Centers/Physicians

Hello highsmith, I am a cc survivor thanks to Barnes. My leed doctor was Dr. William Chapman, he transplanted me twice. My oncologist was Dr. Rama Suresh and radiation oncologist was Dr. Parik. My liver doctor is Dr. Crippin. I have written on here many times about these amazing doctors and need to expierence them to know how loving and caring they are. I was never a number or just another patient, they honestly knew who I was as a person. They always took care of just not me but my family also. My coordinator is Pam Thurston and she never stops caring. I always found it amazing that they never took credit for my survivng and always credited me, my family and a higher being. I am still confused about why transplant is not an option for more of us. I am very suprised that this site list transplant treatment as controversial, I am a living testimony to how wrong that is. If you would like to know more about my amazing expierence with Barnes e-mail me, I would love to talk to you and help you navigate your way thru this miracle instution. Cathy

Re: Treatment Centers/Physicians

I agree with you about Mr Menon  Katja.  He did my whipple by keyhole on April 2009 (12-hour operation).  I was diagnosed in York, and referred to St. James in Leeds.

Mr Menon is a wonderfully warm and caring surgeon, and he cares about each and every patient, and remembers the small details about everyone.  On a six-months checkup, he took care to ask how my mum was, because I mentioned after my operation that she had her own health problems.  How many other surgeons would remember this six months later?

Sylvia xxxxxx

Re: Treatment Centers/Physicians

My surgeon for my resection was:
Myron Schwartz MD-He is part of Surgical Oncology Associate at Mt. Sinai Hospital in NYC. There are 4 surgeons in this group all with experience in CC and liver transplantation and resections.
Administrative office# 212-241-2891
Fax# 212-241-1572
Referral# 212-241-9049

Re: Treatment Centers/Physicians

I forgot to mention this Centre in Glasgow, The Beatson West of Scotland Cancer Centre.

http://www.beatson.scot.nhs.uk/content/

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

About time I added our miracle workers

Dr. Alan Hemming Surgeon, UCSD San Diego

Dr. Paul Fanta, oncologist, UCSD Moore's cancer center

Dr. Thomas Savides, ERCP, UCSD San Diego

And our unsung hero, the man who suspected klatskin tumor immediately and sent us down the right path,

Dr. Sam ElSheikh, Gastroenterologist, Grossmont Hospital

Re: Treatment Centers/Physicians

What a blessing that you had someone who recognized or suspected the tumor immediately and sent you down the right path. Many are not so blessed. Thank you for sharing those who have supported you on your journey. Blessings, Susan

Re: Treatment Centers/Physicians

Hi Marion

This information is something that is so badly needed in the UK.   AMMF (the UK's cholangiocarcinoma charity) is working on providing a database of as many specialists and where they are based in the UK as we possibly can.

Our new website has just gone live, and the section on UK specialists is on there, and will be expanding as more information comes in.

For anyone wishing to access this information, please see www.ammf.org.uk.

Marion , thank you for the wonderful resource you provide to the cc family with the Cholangiocarcinoma Foundation website ...

Helen

Re: Treatment Centers/Physicians

Hi,
I was treated at Mayo in Rochester, MN. I saw a liver specialist, Dr. Lewis Roberts who was very straightforward and knowledgeable. He was able to have me see the surgeon in the same day and get things going for me to set up my surgery. My surgeon was Dr. David Nagorny. He came highly recommended and I felt very comfortable with him. He was great and his nurse was awesome. I live about 8 hours from Rochester and his nurse was great about calling me after surgery and checking in on how I was doing. I followed up with an oncologist Dr. Michaela Banck, and she was great also. The oncologist was very thorough and spoke with the surgeon, the pathologist, and other doctors in her group about my case and they decided on the best course of action for me. I felt very lucky to be there and feel I received the best care I could have.
Shari

Re: Treatment Centers/Physicians

Thank you Gavin and Marion.

As far as the specialist information on AMMF's site is concerned, the details we are including have been as a result of direct contact with the hospital/team concerned - so it's slow going, but we want to be as certain as we can be that the information we are providing is as accurate as possible.  We will be adding to this information as new details come in or are confirmed ...

Climbing that mountain, and looking for the miracle!!!

Helen

Re: Treatment Centers/Physicians

"And, what better testimony is there than that coming from a patient."

That is very true Marion, and has given me food for thought - maybe in time, we can start a sub section within AMMF's website where people can leave their recommendations ...

Helen x

Re: Treatment Centers/Physicians

I would like to provide the name of a brilliant & brave surgeon - Dr. Tomoaki Kato.  He is affiliated with Colombia University in New York, NY.  Dr. Kato is a pioneer of multi-organ transplants, as well as ex vivo surgery (outside the body).  I am honored to say that I have had the pleasure of being one of Dr. Kato's ex vivo patients.  I was diagnosed with cholangiocarcinoma & after failing chemo & being told by many physicians that my tumor was inoperable & there wasn't much hope, Dr. Kato removed my tumor in its entirety.  Four months later, I am alive & well.  Please research Dr. Kato & contact him if you've been told there is no hope.  He is my hero & I hope will become yours.  Best wishes to all.  My prayers are with every one of you!

49 (edited by chezWright@aol.com Sat, 08 Jan 2011 21:24:31)

Re: Treatment Centers/Physicians

I would like to recommend my oncological surgeon at Johns Hopkins in Baltimore.
Dr. Michael A. Choti.  I owe my life to him.  He is an outstanding surgeon who specializes in pancreatic surgery, cholorectal and has done many bile duct surgeries.  He  is a wonderful human being as well with a great sense of humor.  Very, very skilled.
People interested in him might Google his name and find all that he has done and is doing.  The Cholangiocarcinoma organization had him as the featured speaker on a webinar in August 2010.

Re: Treatment Centers/Physicians

LOVE Dr Christopher Siegel, University Hospitals, Cleveland, OH.  When the Cleveland Clinic expert recommended my brother seek hospice a coule of years ago, Dr. Siegel performed a very successful surgery and my brother was considered cancer-free up til recently.  Very easy to speak with and understand, tops in his field.