Topic: New Member to Board

I was diagnosed on March 21,2013 and was told I had 2-4 months if I did nothing.  I consulted wth the Liver specialist at MSKCC (Sloan in NYC) on the 25th (DR. Yuman FONG).  He offered to attempt surgery but first would look laparsopically and if I was not loaded with Cancer in Abdomen he proceed with BIG Surgery.  TEXT went out to PRAY for BIG Surgery.  I had the Surgery April 13th and was in hosp. 6 days.  Got a Hepatic Pump implanted for Chemo to go directly into Liver and started Systemic Chemo + Pump May 15th.  My Tumor marker CA19-9 has gone from 53,900 to 157 and I remain on Chemo/Pump Q2 weeks.  My recent CT scan showed Stable disease with no new growths. 
I had the opportunity this past Tues to meet with 3 members of this board, Kris, Chris, and Karen at Peddlers village for lunch.  I will be in Trenton on Monday to Lobby for the Death with Dignity Law to be passed in NJ.  I feel good now soo feel I need to be as active as possible and enjoy each day.  I have been an Oncology Nurse/Hospice and facilitator for End of Life issues for 25 years.  So glad this board is here as we all need help to navigate the system, share our experiences and get advice so we don't waste time geting appointments and tests done. So I thank you all in advance for any and all info and support.

Re: New Member to Board

Hi Janet,

Thanks for sharing your story with us.   Happy to hear things are going well for you concerning your illness.  You sound like you have a great attitude and I'm glad you found this board although sorry you have a need for it.  So glad you were able to meet some of our members in person.  You won't find a more caring understand bunch anywhere.   Glad you are here.  I think you already know that you will get a lot of, kindness, understanding and support here.  I also think you will be a great help to others.  Welcome aboard.  smile

Love & Hugs,

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: New Member to Board

Welcome to the group Janet - It's a great family that no one really wants to be a part of but like the rest of us you are glad to have found it. I too am a nurse and have worked Home Health and Hospice for the most of nursing career. My husband was diagnosed in May of 2013 with CC - he luckily had an operable Klatskin's tumor and surgery was done June 4th. He had 12 days in the hospital and has been hospitalized three times since with sepsis. We are now 7 rounds through 12 rounds of Gem/Ox. His CT scan a week ago showed no evidence of disease. Other than then chemo slowing him down some things are going good.
It sounds like things are going pretty good for you. The surgeon the we had do his surgery trained at Sloan so was have heard nothing but good things about them. You do sound like you have a good positive attitude which is needed through this roller coaster ride.


Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: New Member to Board

Dear Janet, welcome to our elite little club but sorry you had to find us. Wow, that was quite a remarkable drop in the tumor marker, keep up the good work! And we love the word stable as much as the word surgery. We always say we were not born with tattoos of time frames for life so we really don't listen much to that way of thinking and you are sure proof! If I lived near you I would love to be with you in Trenton to Lobby for Death w/ Dignity law. To me it sounds like you are doing great and grabbing the bull by his horns. Hang in and hang on and please keep us in your loop.