September 9, 2015 at 10:09 pm #30009kris00jMember
I guess I should update this.
Started April 2011 at Memorial Sloane Kettering. Dr. Kemeny was my onc and Dr. Fong was my surgeon.
Surgery was cancelled completely.
In 2012 I went to Fox Chase for SBRT radiation with Dr. Meyer.
In March 2013 I transferred my care to Fox Chase with Dr. Denlinger and began the trial I am currently on.
I never was comfortable with Dr. Kemeny. I am much happier with Dr. Denlinger.July 24, 2015 at 4:06 am #30008hope_12Member
Hello everyone , I’m so glad that I found this site it has helped me a lot reading what you have been through .
my dad was diagnosed with intrahepatic cholangiocarcinoma in august 2014, he is 53 he had scans after weight loss that made the doctor suspicious, then a liver biopsy of the mass .
he was not a candidate for surgery because the largest tumour size was in his left lobe of around 16 cms ( 6 inches ), and involvement of all other lobes of the liver with smaller lesions , his performance status was excellent so he was started on gemzar/cisplatin in his local hospital in saudi arabia which is the biggest and leading one in the middle east , king faisal specialist hospital and research centre , he received 6 cycles.
he had I would say remarkable improvement his weight started to come back to base line his ca 19-9 back to almost normal figures as well as .
his scans showed regression of that lesion to 6 cm from 16 cm (2.3 inches from 6.2)
he still had the smaller lesions in other lobes of liver and still wasn’t a resection candidate .
he wanted to be treated beside his family although I have prepared for him to be seen in experienced big centres like mayoclinic but his wish was that if they didn’t have anything significant to offer then I’d rather stay home, which was the case based on their replies ( mayoclinic, memorial sloan catering)
I also looked the option of liver transplant which he wasn’t a candidate because his tumour size is large and that it is intrahepatic and also involvement of local lymph nodes and compression on liver vessels .
after 4 months of chemo he had radiological progression and started on second line xeloda(capecitabine) and oxaliplatin , how ever it progressed regardless and exploded in like 2 months where it has not only come back to previous size but even worse and mets to the lungs .
he had received 5 cycles of his second line and the oncology team stopped it and decided for no further chemo .
he was clinically jaundiced and after ERCP and placement of plastic stent better and bilirubin started to come down .
he has an appointment scheduled in Cleveland clinic , how ever it is a long flight and I couldn’t speak to anyone there to have like a preliminary plan and I don’t want him going there in this condition without any benefit , like getting into a trial or something .
I also discussed with doctors local therapies to the tumour like TACE and RFA .. how ever they said it would do more harm than good at this stage .
I feel so sad and also think always like did they give up easy or is this the nature of this cancer .so what do you guys think ? any similar experience .
thank you guys so much again, this helps a lot
the medical oncologist : dr Ali aljubran
surgeon dr Tarik AminApril 8, 2015 at 1:09 am #30007grayeMember
I am being treated at Florida Cancer Specialists in West Palm Beach, FL
My oncologist in Dr James Harris.
My gastroenterologist (stent complications) is Dr. Stephen Steinberg.January 30, 2015 at 9:34 pm #30006mooseMember
My surgeon that just did my liver resection was Dr Charles Pilgrim, at Frankston hospital, Victoria, AustraliaJanuary 17, 2015 at 11:50 am #30005anna-marie1Member
I have had 2 successful liver resections:
1. Prof. Jake Krige (Surgical gastroenterology & hepatology)
Professor of surgery at University of Cape Town
operates at Grootte Schuur hospital, Cape Town
2. Dr. Kellee Slater
Brisbane Liver & Gallbladder surgery
AUSTRALIAJanuary 13, 2015 at 7:32 pm #30004mattreidyParticipant
I went to the Mayo Clinic in Rochester, MN for testing and in hope of having a liver transplant for my perihilar CC in Dec 2013. I saw Dr. Greg Gores and his fellow Dr. Sumera Rizvi. I was luck enough to be able to have a resection instead of a transplant. My surgeon at Mayo was Dr. David Nagourney. I choose not to pursue adjuvant chemotherapy because I wasn’t convinced the benefits outweighed the risks so I have no oncologist. I continue to travel from VA to MN regularly for “surveillance”.January 1, 2015 at 11:58 am #30003middlesister1Moderator
Mom is being treated at University of Maryland Greenebaum Cancer Center.
ONC- Dr. Horiba (who is leaving end of January)
Surgeon who attempted resection was Dr. Hanna
Interventional Radiologist (2 SIRT treatments)- Dr. Moeslein
Although I do not think they see the numbers of CC patients that some other centers may, they do have the inter-disciplinary tumor boards. We have been very happy with Dr. Moeslein. The ONC taking over has written on genetic mutations being important in treatment of Esoph. cancer, so I’m optomistic that when we meet her, she’ll be willing to send Mom’s tumor for the genetic mapping (we were assured they still have it from the biopsy).January 1, 2015 at 5:24 am #30002iowagirlMember
My surgical oncologist was Dr. Kaye Reid Lombardo at the Mayo Clinic in Rochester, MN.
My medical oncologist is Dr. Domingo Musabay at the Mayo Clinic in Rochester, MN.
JulieTDecember 31, 2014 at 10:56 pm #30001dukenukemMember
Just saw this and thought I would add my history.
I live in northeast Ohio and am being treated at the Seidman Cancer Center in Mentor, Ohio. It is a joint venture of the Lake Hospital System (local) and the University Hospitals of Cleveland, Ohio.
Their experience is limited. I was told (finally) that they have treated four patients in the last three years. They seem to follow standard protocols but lack experience and imagination, especially as things continue to degrade. Do not confuse effort and empathy with knowledge and results.
On the good side, I saw Dr. Steven Alberts at the Mayo Clinic in Rochester, Mn for a consult on treatment. I was impressed by him but it is not practical to see him as my oncologist.
The main reason for this post was to bring it up into the “queue” so that others could contribute current information.
DukeSeptember 27, 2013 at 1:43 am #29999rschureMember
Our surgeon was Dr Myron Schwartz at Mount Sinai Medical Center, NY
He is amazing. He did an outstanding surgery on my father n law.
Oncologist 1st round with Andrew Jennis at Hackensck in North Jerset
Met today with some guru Dr Steven Schreibman at Morristown Medical Center. He’s been in the field a long time and we are very exited to work with him. He is going to doIN-VITRO DIAGNOSTIC TO GUIDE CHEMOTHERAPY SELECTION For solid tumors. This is or treatment of my Farther n laws recurrenceSeptember 24, 2013 at 12:38 am #29998
Lainy – Do you know if the Banner Boswell Hospital is a larger hospital? The medical community in AZ is so different from how it is in ND. I didn’t know you could make an appt. with a Dr. at a hospital. Here we can only make appts. at clinics. We do not have “Urgent Care” facilities here either.
When you say that you “looked up” this cancer center and Dr. Choi, do you mean that you have some type of list with doctors and centers that work with CC?September 22, 2013 at 11:38 pm #29997
Thanks for all the info, Lainy. From what I could find on the internet, Dr. Choi seemed to be the best fit for Ron, for our area of the valley. Dr. Choi practices at 2 locations – one in Glendale and one in Avondale. He also has patients at Banner Boswell in Glendale. He specializes in Hepatic cancer. So you don’t think a cancer center is a good place to go?
Ron’s diagnosis is Adenocarcinoma. Primary CC with meta to the liver. He has had 2 chemo treatments of Gem/Cis and has done very well. We were told that the large tumor shrunk quite a bit after the 1st treatment and isn’t as “spongy”. Last week was an off week. This week he sees his ONC and has another treatment.September 22, 2013 at 4:08 am #29996
My husband and I are snowbirds… live in ND in the summer months and Phoenix in the winter months. We will be leaving for AZ in about 5 weeks and my husband, who was recently diagnosed with CC, will need to find a new Dr. in the Phoenix area. Our first thought was to go to Banner MD Anderson in Gilbert, AZ but our current Dr. says that it is not anything like the MD Anderson in Houston and is basically like any other hospital – just that the Dr.s in Gilbert train in Houston and consult with the Houston Drs. We are leaning towards going to Dr. Choi who works at the AZ Center for Cancer Care in Glendale, AZ. Have you heard of Dr. Choi or this facility? What are your thoughts on MD Anderson in Gilbert now that it’s been open for 2 years. Our Dr. also says that the Mayo Clinic in Scottsdale is not as good as the Mayo Clinic in Rochester. Any thoughts?Lainy wrote:Teddy Sardina is being treated by: Dr. Jack Cavalcant Oncologist
Banner Desert Hospital Phoenix
Dr. John Kresl Radiologist
Banner Good Samaritan Hospital Phoenix I want to add that Mayo Clinic in Phoenix has been doing a lot of liver transplants and MD Anderson is opening here the end of September 2011.August 12, 2013 at 1:45 pm #29995mphungMember
My mom had her whipple surgery at the University of Alberta hospital in Edmonton, Alberta Canada
Her surgeon is Dr. Norman KnetemanJune 19, 2013 at 4:00 am #29994thebompie4Member
no worries, i wondered if it had anything to do with hospitals that maybe
“specialize” in the kind of cancer more–
If I had any kind of computer skills I would help–or if it’s something simple, I could try….
let me know!
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