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- This topic has 129 replies, 89 voices, and was last updated 12 months ago by Patrickf.
January 25, 2011 at 3:44 pm #29945pcl1029Member
For patients and caregivers in or near OHIO.this may b of value.
http://cancer.osu.edu/viewer/Pages/index.aspx?P=524January 19, 2011 at 11:22 am #29944duke0929Member
DR. MYRON SCHWARTZ-LIVER SURGEON
5 east 98th st-mount sinai hospital-12th floor
new york, new york
phone number 1-212-241-2891
DR.MAX SUNG -ONCOLOGY MEDICINE
1 gustave l. levy place
new york, new york
phone number- 1-212-241-7902
DR. JOSEF MACHAC-DIRECTOR, NUCLEAR MEDICINE
one gustave l. levy place, box 1141
new york, new york
phone number- 1-212-241-7888
DR. JOSHUA WEINTRAUB- RADIOLOGY
one gustave l.levy place
new york, new york
all of these doctors are under one roof and are KNOWLEDGEABLEof this cancer… i cannot say enough good things about the hospital or its doctors……ron and lucilleJanuary 18, 2011 at 4:54 am #29943jathy1125Spectator
Tom-Sorry that Barnes was not a positive expierence for you, but for every negative there is a positive. I am the positive. I was diagnosed thursday at 3:30 on July 31, 2008 at Barnes West County and by friday night I was at “big Barnes” and on sunday morning Dr. William Chapman was at my bedside. I never had to ask questions because they gave us so much hope and information. (I am sure we probably did ask though)
My oncologist was Dr. Rama Suresh, she sent me a hand written and signed christmas card!! My radiation oncologist was Dr. Parik, who I stopped by to say thank you to last week, knew every detail of my illness the last year even though I hadn’t seen him since December 2008.
My liver doctor is Dr.Jeffrey Crippin, my new best friend!
I saved the best for last Dr. William Chapman my transplant surgeon. What can you say about a man who saved your life twice. When I coded on July 4,2009 he wouldn’t give up on me and went again others negative opinions to continue life saving measures, which meant another liver transplant, he found me a liver in 14 hours. The most amazing part is he considers me a miracle and sent me a letter saying how amazing I was. Dr. Chapmans staff is every bit as humble, dedicated and unpretenious as he is.
I feel a reponsibility to make sure this information is out there. It is the one way I can honor my donors, the doctors and hospital that help me see my daughter graduate, 3 christmas’s, 3 more birthdays….
I wish everybody who has to go through this awful cancer, could come out on the positive side like I did.
Good luck and all my prayers to this special family- CathyJanuary 17, 2011 at 10:47 pm #29942kentuckyjackMember
For the greater part of 2010 I was treated by the physician staff of Barnes-Jewish Hospital/Washington University Medical Center of St. Louis, MO. I’ve changed to another hospital in St. Louis for further treatment at this time.
My main treating physicians at Barnes were:
Dr. David Linehan, whom I refer to as the “happy cutter”, an hepato-biliary surgeon of excellent reputation and highly experienced at liver surgery. He twice reviewed me for possible liver resection but unfortunately both times he found that the IHCC tumor mass had infiltrated too far into the liver vasculature to permit a likely outcome of surgical success–if I understand him correctly. The reason I refer to him as the “happy cutter” is that he seemed to me to be almost enthusiastically happy when surgery seemed a likely possibility, but spoke to me very little and much less joyously once surgery was ruled out. He seems to truly enjoy his surgical work! Can’t say enough good about him, except I wish he could have done the resection.
Dr. Benjamin Tan, whose specailities include medical oncology and hematology. He oversaw the chemotherapy administered to me this year, and the outcome was reported as quite successful, having shrunk the “huge” single tumor by about one-half in size from 10+ cm to about 5+ cm .over the course of treatment in spring, summer and fall of 2010. In all honesty, his course of treatment has led me to state that Barnes has the best scientific-based (AMA and FDA-approved science, I might add, for better and for worse) presently available for cholangiocarcinoma in the St. Louis area. My experience with Dr. Tan would lead me to agree with another reporting here that Dr. Tan seems somewhat conservative in his approach to treatment.
I have also consulted with another Barnes phycician of exceptionally high repute, who said to me “Unfortunately, we have not been very successful in our consertavive approach to treating Cholangioncarcinoma, except for surgical resection where possible. Therefore, you have little to lose by pursuing alternative treatment methods.” This means that in the understanding of some of the best minds at Barnes, they are applying treatments which are unlikely to be completely successful, and yet by adhering to conservative methods, they are closing their minds to alternative methods which might work.
Dr. Tan has repeatedly told me that no patient suffering from cholangiocarcinoma and being treated by Barnes has survived more than four years after the date of the original CC diagnosis–unless the patient undergoes a successful surgical resection. All that being said, Dr. Tan is, as yet, the only physician with whom I have encountered a personality conflict severe enough to require me to seek treatment elsewhere. I am now being treated with chemotherapy by a medical oncologist at another local St. Louis area hospital.
Dr. Robert Myerson, Professor of Radiation Oncology. An excellent and persuasive communicator, with a great knowledge of radiology, cancer, and with the patience required to answer many of my questions about radioembolization and stereotactic body radiation therapy. He and his associates designed and administered the five SBRT treatments in a clinical trial during August and September 2010. Follow-up is to be scheduled.January 16, 2011 at 12:18 am #29941myfathersdaughter-2Member
Mercy Oncology, Janesville Wi, Dr Shekani is terrific
UW Madison, wi, oncoloy dept is great,
surgeon Dr Winslow, Dr Cho is liver specialist surgeon
can’t say enough good about UW madisonJanuary 8, 2011 at 5:33 am #29940candyzSpectator
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.January 6, 2011 at 3:57 pm #29939chezwrightaol-comSpectator
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.December 14, 2010 at 4:00 am #29938kimcirucciSpectator
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!December 8, 2010 at 8:49 pm #29937
“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 xDecember 8, 2010 at 6:21 pm #29936
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!!!
HelenDecember 8, 2010 at 12:36 am #29935sharimayMember
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.
ShariDecember 7, 2010 at 8:49 pm #29934
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 http://www.ammf.org.uk.
Marion , thank you for the wonderful resource you provide to the cc family with the Cholangiocarcinoma Foundation website …
HelenDecember 7, 2010 at 6:43 pm #29933slittle1127Member
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, SusanDecember 7, 2010 at 10:12 am #29932cinnaminSpectator
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 HospitalDecember 4, 2010 at 7:08 pm #29931gavinModerator
I forgot to mention this Centre in Glasgow, The Beatson West of Scotland Cancer Centre.
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