November 8, 2010 at 1:30 pm #29929julygirlMember
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 xxxxxxNovember 7, 2010 at 3:15 pm #29928jathy1125Participant
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. CathyNovember 7, 2010 at 3:11 pm #29927katjaMember
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.November 7, 2010 at 3:14 am #29926highsmithMember
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!
StaceyNovember 1, 2010 at 5:05 pm #29925cherbourgMember
My Mom was treated at Duke University Medical Center
Her oncologist was Dr. Michael Morse.
PamNovember 1, 2010 at 2:59 pm #29924jladamsMember
I am sending all the info I have on myself to Dr. Pawlik at Johns Hopkins-thanks again to all of you! Sincerely, JohannaOctober 29, 2010 at 7:30 pm #29923betsyMemberOctober 29, 2010 at 7:16 pm #29922dianne-nMember
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
DianneJune 8, 2010 at 7:24 pm #29921linda-zMember
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.
My Oncologist at the Univ. of Chgo. is Dr. Blaise Polite
My Radiation Oncologist at the Univ. of Chgo. is Dr. Stanley Liauw
Linda Z.June 8, 2010 at 8:51 am #29920julygirlMember
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.May 23, 2010 at 3:10 am #29919dmeekParticipant
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/April 14, 2010 at 9:45 pm #29918gavinModerator
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.
GavinMarch 22, 2010 at 5:13 am #29917rowena32Member
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.March 4, 2010 at 1:12 am #29916sharpeiloverMember
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.March 4, 2010 at 12:36 am #29915sharpeiloverMember
I do hope I did not come off as critical. I am just wondering how best to use these names. My mother’s case does happen to be pretty “hopeless”, so knowing more than just the name of the doc and the hospital would help. But I realize we are unique. We have not been offered much after quite a bit of searching. I really feel that having over 5 (my mother now has at least 40) bone mets is a death sentence, with chemo being the only option offered. But she is feeling quite healthy, doing 90 percent of what she wants. It is just so strange to think that she is going to die quite soon. That is why we have some cognitive dissonance- can’t SOMETHING more effective still be done as all her functions are still very good???? Most of her body is successfully resisting this evil cancer.
Her first round of gemzar resulted in no side effects except for some fatigue, flat (still high) tumor markers, and a doubling of the mets in her spine from 20 to 40.
Everything else is unchanged. So she is on gem one week then gem-cis the next for 3 months, one month now done. Thankfully no side-effects except fatigue (quite remarkable.) No idea what else is happening, ie with the cancer.
Won’t know for a while.
Supposedly, the primary tumor is not any larger than when diagnosed in early Nov 2009, however.
She has never had any symptoms of trouble with the bile duct or liver, etc.
She has had her radiation on one painful tumor in the neck area. The window for radiation on her spinal mets is closed (not sure why). She has Zometa every month with her chemo. That is all she is eligible for.
The big question is: would a doctor anywhere be willing (or legally able) to try anything else on her? Cyberknife is a tumor by tumor thing- she has too many in her spine for that. Local surgery would be a great option, if only she did not have the mets in her spine. She apparently has NO OTHER tumors, not in the liver, no where.
Anyway, we are making sure she is enjoying her life, is comfortable. We just feel so strange “giving up” like this. Our understanding is that a successful result on average with the gemzar is only a few extra months, hopefully side-effect free.
God bless all of you for your inputs, your listening, your advice. And may each of you find some light in your troubles.
Margaret, if you prefer to put this post on another board, feel free.
We even wonder if she really has cholangio- bone mets seem pretty rare, esp if there are no other tumors beside the primary. Or if she has two cancers. Anyway, the biopsies at Sloan-Kettering resulted in “probably cholangio/all same cancer”. MRI shows her primary tumor is sitting on the central bile duct. The local doc is “assuming” it is intrahepatic. The only way they got cancer cells was with a needle biopsy- the endoscopic brushing on the inside the central duct failed, and the local doc thought it looked smooth- again not usual way cholangio presents, if accurate. I am now understanding that there are really no absolutely 100% certain diagnoses with cancer. Cell differentiation is the other factor. So that is it.
I will post about the docs she has seen next.
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