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.March 3, 2010 at 9:38 pm #29914melissaannSpectator
Although i was not the patient and i did go to every apt with my grandmother we went to Fox chase Cancer Center ( 333 cottman ave philadlephia, PA 19111) 215-728-2570. we saw Steven Cohen.March 3, 2010 at 11:57 am #29913mlepp0416Spectator
My Husband Tom had his liver resection for CC at the Milwaukee VA Hosptial, Dr. Teresa Quinn was his surgeon. She is awesome and came to the VA from Froedert Memorial Hospital in Milwaukee. She has an extensive background in Liver Resections and Liver Transplants. Somewhere down the line, another Veteran may find this useful.
(The VA uses the team approach and many if not all his doctors were from Froedert Memorial Hospital and the Medical College of Wisconsin)
His current treatment is being done at BayCare Aurora Hospital, specifically at the Vince Lombardi Clinic. Dr. Nancy Davis is his oncologist. Dr. David Rhodes is his radiation Oncologist. Dr. Dempsey is his Interventional Radiologist and Dr. Ravi Kondivatti is his Gastrointestional Doctor. (All at BayCare Aurora hospital in Green Bay, Wisconsin)
I can’t help but feeling that Tom is helping all these doctors learn about Cholangiocarcinoma and all of his experiences may be helping others that come down (in this area) with Cholangiocarcinoma.
MargaretMarch 3, 2010 at 1:56 am #29912sharpeiloverMember
Seeing these names and hospitals listed is helpful, especially for geographical guidance.
However, should I assume that people are sending in names ONLY if they were happy/satisfied with their experience??
Also, maybe only I care about this since my mother is stage IV (considered non-resectable due ONLY to bone mets & NOwhere else), but I also would love to know what type of treatment these gave, and what stage the cancer was, and how it worked out.
We are “beyond geography”, hoping to find someone who is willing to take a chance with a very advanced but healthy patient by trying different things.
Diagnostic second opinions, pain management of bone mets, gall bladder surgeries, etc are all very different aspects that we could also be touching on, in addition to expertise in administering chemotherapy.
I am hesitant to even list my mother’s physicians, as they have drawbacks in certain ways. But maybe I should, with a short description of our experience???
Please advise. Many MANY thanks for doing this and so much else!!!March 2, 2010 at 11:00 am #29911marylloydSpectator
My husband Tom has received his treatment at the James Cancer Hospital, part of OSU Medical Center in Columbus Ohio. His original surgeon and continuing care Dr. is Mark Bloomston. He is also seen on occasion by Dr. Tanio-Bekaii Saab. We have also gone to the UPMC Liver Cancer Center in Pittsburgh, Pa and seen Dr. Clarke Gamblin , basically for second opinions and possible liver transplant options. Based on a scale of 1-10 I would give all of them a 10. MaryFebruary 26, 2010 at 10:40 pm #29910gavinModerator
Prof John Primrose works with CC patients at Souhampton General Hospital in the UK –
GavinFebruary 26, 2010 at 8:19 pm #29909ajcarman72Spectator
My mom has been seen by – and is very happy with – Dr. Marschke in Fort Collins, CO:
She has also seen Dr. Alberts at the Mayo in Rochester and Dr. Eckhardt at the University of Colorado in Denver.November 16, 2009 at 2:37 am #29908silent_cluieMember
In the Internal Medicine Associates my Dad nearly been treated by Richard Christopher, MD
Because he said that my Dad has a mental health problem.. another says none.October 21, 2009 at 2:08 am #29907scarman2009Member
I was seeing Dr. John Keech as my oncologist here in Chico. He has relocated to Seattle. Terrific physician! I’m now seeing Dr. John Hayward.
My surgeon is Dr. Brendan Vissar (as well as the student community) at Stanford Medical Center.October 20, 2009 at 2:13 am #29906pat_los_gatosSpectator
Mary’s surgeon for her liver trisegmentectomy was Dr. Brendan Visser of Stanford. Mary’s oncologist is George Fisher of Stanford. You can find them both by putting their names along with Stanford into your google search window. It is actually faster than using Stanford’s own search engine.October 10, 2009 at 12:47 am #29905defkolorsSpectator
My mom is being treated at Northwestern Memorial Hospital in Chicago, Illinois.
Talia Baker – Surgeon
Mary Mulcahy – Oncology
Robert Lewandowski – Interventional Radiology
They’ve done a great job with my mom thus far!!!
LauriSeptember 30, 2009 at 12:57 pm #29904betsySpectator
My liver resection was performed at the Cleveland Clinic and my surgeon was and still is, Dr. John Fung. He is the Department Chair of General Surgery at the Cleveland Clinic and was the former Chief of the Division of Transplant Surgery at the University of Pittsburgh. For appointments the number to call is 216-444-3776. http://my.clevelandclinic.org/default.aspx
Dr. Fung is a remarkable surgeon. He took amazing care of me and got me through the darkest time in my life. Although he would be totally in his right to have a huge ego, he doesn’t. Can’t say enough positive things about him.
Just a note about the Cleveland Clinic….it is a HUGE teaching hospital so there are “teams” that take care of “pieces/parts” of a patient. During my 21 day stay at the Clinic after my resection, I was really frustrated at the lack of communication between the teams.September 8, 2009 at 10:48 am #29903scragotsMember
My surgery was at IU Medical Center in Indianapolis Indiana (same as Amylea’s mom). I am 2 years 7 months out of surgery and doing well. Next CT scan is 09/18/09.
My wonderful surgeon was:
Dr. Mary Maluccio
1001 West 10th St.
WD OPW 425
Indianapolis IN 46202
I would definitely suggest she be on your list. Compassionate, caring and wonderful surgeon.
SueAugust 18, 2009 at 1:32 am #29902louiseSpectator
My tests and treatments have been at the Goshen Center for Cancer Care.
My surgeon is Dr. Daniel Diener. Dr. Richard Hostetter assisted with the diagnosing surgery May 29, 2007, and he will pray with his patients who ask him to do so.
My primary oncologist is Dr. Carol Westbrook, and I love her!
My primary radiation oncologist is Dr. James Wheeler, and Dr. Brown has assisted him. They are caring men who both go to my church.
Dr. Michael Hall did most of the stent work (I have a stent in each branch and 2 stents in the common bile duct.) He serves at several area hospitals, so he is only at the Goshen Hospital 1 day each week. Seems to be the way some of the smaller cities get quality doctors when the specialty is not commonly needed. He looks Doogie Howser young, so I was tickled to learn that he is older than my oldest kid. He’s very good at what he does.
The Goshen Cancer Center has its own website, http://cancer.goshenhealth.org/main
listing all the cancer doctors there as well as other caregivers in the Cancer Center. They take a holistic approach, with specialists in naturopathic medicine, acupuncture, spiritual help, almost any approach you want to consider.
I have truly been blessed to find such excellent care so close to home. When the pathology report came back after my hysterectomy suggesting ovarian cancer, I was referred to Dr. Gini Fleming at the University of Chicago Medical Center. My oncologist sent all the reports for re-evaluation, and they confirmed that it was NOT ovarian cancer. So I saw a specialist (I can’t remember his name right now) in the adenocarcinoma/cholangiocarcinoma family. I think he expected to see a tired, listless, aging patient but was pleasantly surprised that I had so much energy and good memory/understanding of my health as well as good questions. He suggested I go home and enjoy life! The U of C Hospital is a teaching hospital. I don’t know why, but I was seen there and never ever saw any bill from them. My oncologist, Dr. Westbrook used to work at U of C and was good friends with Dr. Fleming. Whether I benefitted from their friendship or if that is the way the teaching college tries to work or what, I don’t know, but if the cancer returns and clinical testing is warranted, I’ll be back there. They have a deal with some of the area hotels for patients coming from out of town. Because the hospital initiated the reservation, my friend and I stayed in a very nice hotel in downtown, with a great view of the city for only $69 a night. That was about 1 year ago, in August 2008.August 11, 2009 at 12:19 pm #29901gavinModerator
Great idea for a thread Marion.
My dad was diagnosed and treated with photodynamic therapy by:
Mr Iain Tait
Hope that helps.
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