January 10, 2017 at 6:32 pm #89633
Reviving this thread once more. Please be so kind and share your information on this important thread.
Thanks a million,
MarionSeptember 15, 2016 at 2:38 am #89632
Thought to revive this thread once more.
MarionAugust 3, 2016 at 4:21 am #89631
thought to revive this thread once more.
Thanks for helping
MarionJuly 16, 2016 at 3:41 pm #89630
Please continue to populate this important thread.
Thanks a bunch,
MarionSeptember 13, 2015 at 5:47 pm #89629gavinModerator
Thanks for that Aniket.
My best to you and your dad,
GavinSeptember 13, 2015 at 9:33 am #89628aniketMember
My father is currently being treated at Tata Memorial Center, Mumbai, India. From what I have got from the doctors, they receive around 200-250 cases of cholangiocarcinoma every year. This may not be a very accurate figure. From our research so far, this is the best center available in India for cholangiocarcinoma.
I will provide more details and specifics when I have more time.
Aniket.September 12, 2015 at 8:29 pm #89627
TATA Memorial Center, MumbaiSeptember 8, 2015 at 10:25 pm #89626Hope_12 wrote: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 AminSeptember 8, 2015 at 10:22 pm #89625mphung wrote:My mom had her whipple surgery at the University of Alberta hospital in Edmonton, Alberta Canada
Her surgeon is Dr. Norman KnetemanSeptember 8, 2015 at 10:20 pm #89624Genevieve wrote:In Australia, my husband has been operated on by two excellent surgeons.
Dr Charles Mosse
Hepatopancreatobiliary, Upper GI and Advanced Laparoscopic Surgeon
Calvary Clinic Specialist Medical Centre / Suite 20
40 Mary Potter Circuit
Bruce ACT 2617
Tel: (02) 6253 4122
Dr Charbel Sandroussi
Upper Gastrointestinal, Hepatobiliary and Transplant Surgeon
100 Carillon Ave, Suite 306 RPAH Medical Centre
Newtown NSW 2042
Tel: (02) 9565 1375
Operates at RPA and the Mater Hospitals.
GenevieveSeptember 8, 2015 at 10:13 pm #89623Katja wrote: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.September 8, 2015 at 10:10 pm #89622Gavin wrote:Great idea for a thread Marion.
My dad was diagnosed and treated with photodynamic therapy by:
Mr Iain Tait
Hope that helps.
GavinSeptember 8, 2015 at 10:09 pm #89621mlodge wrote:I am at the Princess Margaret Hospital in Toronto.
Surgical Oncologist is Dr Alice Wei 416-340-4232, Medical Oncologists are Dr Jennifer Knox 416-946-2399 and Dr Anne Horgan, and Radiation Oncologist is Dr Rebecca Wong.
MelSeptember 8, 2015 at 4:00 am #11680
Please share with us the names of physicians/treatment centers involved in your or your loved ones care. With your help patients and caregivers are able to identify physician and/or treatment centers outside the US.
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