Topic: Mother In-Law Just Diagnosed

Hello - My mother in-law was just diagnosed with Stage IV adenocarcinoma of the biliary tract (we will officially know if its cholangiocarcinoma on Tues. but her dr. is leaning that way, although there is a chance that the primary origin is pancreatic).  Unfortunately, at this time it has already metastisized to her liver, pancreas, gallbladder, small intestines, large intestines, and abdominal wall - all unresectable.  They were able to relieve her biliary obstruction for the time being.  We are in the process of trying to find the right oncologist.  I already have the name of Dr. Joseph Ruggiero for NY Hospital, Dr. Ghassan K. Abou-Alfa, and Dr. Karyn Goodman both from Sloan Kettering.

If anyone can share their opinions on these dr. and/or other names it would be greatly appreciated.  Our family is shell shocked, and I am trying to get as much information behind the scenes as I can.  I do realize that her option is either near future hospice or straight palliative care, however any information is helpful.  She is 66. 

This site is great.  Thanks in advance.

Re: Mother In-Law Just Diagnosed

My mom was diagnosed with Stage IV primary gallbladder cancer in March and we met with Dr. Abou Alfa at Sloan Kettering in July for a second opinion. He sees so many patients with these rare GI cancers, so that's a huge reassurance...my mom lives in Tuscaloosa, Alabama and as you can imagine they have never seen a case like hers. He is a very straightforward doctor and as her second opinion, could only make a suggestion towards what kind of chemo treatment she should continue on. Her doctor in Alabama used Dr. Abou Alfa's suggested course and her most recent CT scan showed lots of improvement.

You mentioned that the primary may be pancreatic. We also went to Dr. Daniel Laheru at Johns Hopkins in Baltimore, who sees many pancreatic patients. He was very encouraging and a little more approachable than Abou-Alfa. He has also made himself available to us many times since my mom's visit, as we've called on him with various questions since then. In addition, her insurance actually covered most of this visit but did not cover Sloan-Kettering.

I know this is not much help but we have heard the term "palliative care" many times. Obviously, like you, we are looking to lengthen my mom's life, not just make it more comfortable. The treatments have not been easy to get through but it has helped her accomplish the milestones that the doctors were so unsure of at the beginning.

Best of luck,
Abigail

Re: Mother In-Law Just Diagnosed

Abigail,

Thank you for your feedback.  While I agree with you in your approach to go outside your city of origin to find the best possible treatment, my in-laws (and I say this with lots of love) are NYC snobs so whichever Dr. is ultimately chosen has to be in the city.  Your information on Dr. Abou-Alfa was very helpful.  How is your Mom doing?

Thank you again,
Penny

Re: Mother In-Law Just Diagnosed

She is doing much better. It has taken her about a month to feel more back to normal since her last chemo treatment. She actually is on vacation in Montreal for an entire month which is a tiny victory for her (she's an avid traveler). She's close to your mother in law's age; will be turning 61 in January.

She was on Xeloda for six weeks earlier this summer and took a six week break. She began a 7 week cycle of Gemcitabine/Cisplatin, which ended in late September. That is an incredibly taxing regimen but her scan showed marked improvement...no visible cancer in her lymph nodes, with an 8 mm. "fuzzy area" on her lungs. She is having a follow-up scan to check on that at the end of this month, as it could just be inflammation.

Basically, chemo was the right choice for her, as her tumors significantly shrunk. It's definitely not an easy choice to make but it has worked thus far. Just wanted you to know we were given a VERY bleak outlook and (knock on wood) she has come a long way since then. Always have hope!

Abigail

Re: Mother In-Law Just Diagnosed

Abigail,

Thank you for sharing.  It sounds like your mother is one of those rare individuals with true grit, determination and an indominable spirit.  I hope she has a wonderful vacation in Montreal and that her health continues in the direction that you want.  I am sure I will get well versed in chemo as soon as my mother in-law can get to that next step.  Best of luck to you!

Penny