Is there another chemo for you to try? Did they mention targeted radiation? I presume you are not a candidate for Whipple surgery....neither am I. Please let me know as I will be going for my next MRCP and then they will let me know how they will treat it.
bedrock wrote on Denise@LTC's wall
Hi Denise, my husband was diagnosed with BDC in Dec. 2011 and started chemo in January. He was given gemzar/cisplatin for 6 rounds; March CT scan showed no shrinkage and some growth. Started 5FU/leucovorin combo - had 2 rounds and my husband is weak and his cognitive skills are slowly waning. Doctor suggested no more chemo and suggested pallative/hospice care. Recently went for a second opinion and they agreed that surgery/radiation and other therapies I have read about are not an option due to size/location/numbers of tumors. I did send his pathology slides to Johns Hopkins for a 2nd opinion and there is where I heard the term "cholangiocarcinoma" - that term had not been mentioned in any other test results. I feel I need to explore one more option before "giving in". I came across this site when I registered my husband with ACS and grateful I did come across this. I will use "ask the network" like DaveWaz recommends, however, I wanted to check in and see how you are doing. I sure am open for suggestions! I am trying to convince my husband to be open minded and at least try accupuncture.
Thank you very much and God Bless.
bedrock shared an experience
Drug or Chemo Therapy (Chemotherapy): First round of chemo was gemzar/cisplatin - after 6 rounds, the CT scan showed no improvement and some growth. Next chemo cocktail was 5FU/leucovorin - only 2 rounds; chemo was not recommended on 4/23 visit due to severe fatigue and decline in cognitive functions.
bedrock shared an experience
Oh No (Diagnosed): On 12/30, Bob was diagnosed with Bile Duct Cancer. Here is info based on his 12/30 visit with the Oncologist:
Appointment with Dr. Howard Zipin from the Bux-Mont Oncology Hematology group on 12/30 and from the notes I took, below is what we understood from him:
Bob has tumors involving the liver and he used the terms Mesentery and Adenocarcinoma.
The chemo approach Dr. Zipin is using is a "generalized chemo" which should cover abdominal area, liver and pancreas. Dr. Zipin is hoping that he will see the tumors shrink after 3 months of chemo and that by his 6th month, this will start working in the right direction. There are too many tumors to operate plus they are in the liver and the peritoneum wall and radiation is out of the question because there is no one targeted area and radiation is a very targeted procedure. Bob will have another CAT scan in 6 weeks instead of the usual 3 months so that will determine if he will continue the chemo treatment or if it will be changed.
From the CAT Scan and MRI, Dr. Zipin said this started in the biliary area and is treating this as stage IV biliary-duct cancer. It is a rare form of cancer and the diagnosis is not cut and clear as if it were lung or colon cancer.
The chemo being used are: Cisplatin, which is hard on the liver so he will need to stay very hydrated so the kidneys stay flushed; Gemcitabine is the other chemo which has enough side effects. Both chemos can decrease the number of white blood cells and decrease the number of platelets for blood clotting along with a decreased number of red blood cells.
As for a second opinion, Dr. Zipin was fine with that, except, he wanted Bob to start treatment right away then if Bob wants to seek a second opinion, that is fine. I say Bob because ultimately it is his decision, I can suggest! As you all know, Bob is not a traveller so I do not know how he will react if he did agree to travel, even to Phila., for a second opinion.