37 year old male diagnosed with stage 4 CC – welcoming any advice
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Jason, I promise you that once a treatment is in place the fright will turn to fight. Do not be thwarted by the words Stage IV as we have had quite a few Members beat the odds! A good attitude and being strong will get you far. Not to mention those 2 Munchkins of yours!
Your responses, this discussion & website is a blessing. I’m still learning everyday what this type of “Cholangiocarcinoma” cancer that I’m dealing with.
Jason maybe this will help on Hospitals!
On our home page click on Discussion boards → Hospitals → Treatment Centers/Physicians at the bottom of the Home Page.
Dear Jason, I am so sorry you had to find us but WELCOME to our remarkable family. You have done everything just as a pro would do it. There are some amazing Hospitals East of you like NY Presbyterian, Sloan Kettering and a few others where they are a tad more aggressive than most. MDA was a great place to start. Gem/CIS is usually the 1st cocktail of choice. I want you to know that new things are popping now in the treatment of CC, we are being heard! Know that the decisions you make will be the right ones, we all graduated on this journey from GUT 101! Never heard anyone being steered wrong by their gut. You have come to the best place to be as everyone is free here to rant, rave. question or advise others. It is very cathartic to write how you are feeling. I hope the drain is working well for you, my husband had an external drain. He got used to it just fine. My best wishes to you and your family and I know more will be welcoming you to our Site. Please keep us posted as we truly care.
Dear Jason,
Glad you found this site, but sorry for the reason why you came looking. I can’t be of much help, except to say that second opinions are always good and I have heard a lot of good things about Mayo. I’m sure that others will be along soon that can give you some good advice.
My heart goes out to you and your family. I have 2 sons in their 40’s and my husband passed away from this disease, so I guess it hit’s me closer to home. You have your age on your side and also your determination.
Hoping you get some good advice and that things go well for you and your family. Stay with us as there are a lot of good people here willing to share their experiences and information with you.
Take care and know that you and your family are in my thoughts and prayers.
With Love & Hugs,
DarlaThis discussion forum board is absolutely wonderful.
After experiencing jaundice and stomach pain for over a week, I checked myself into a local Orlando hospital’s ER in early April 2013. After MRI and CAT scans, drs noticed bile duct obstruction. Utilizing ERCP (endoscopic procedure) and interventional radiology procedures (PTC), specialists were unable to placed a stent at the obstruction area and had to put in an external biliary drain. Drs were unable to identify the cause of the blockage but had serious suspicion that cancer was involved.
My wife and I then decided to fly out to the highly regarded MD Anderson of Houston for 2nd opinion from Dr. Jean-Nicholas Vauthey. Dr. Vauthey ended up admitting me to the hospital so they can attempt to install the stent & determine the cause of the blockage. After successful install of the stent and taking sample of very tiny “nodules” near my liver/abdominal area (peritoneal area) for biopsy, we were given the devastating news by Dr. Vauthey that I have been diagnosed with stage 4 CC. Dr. Vauthey is unfortunately unable to operate on me and the onsite oncologist is recommending chemotherapy (Gemcitabine & Cisplatin).
I’m 37 years old and happily married with two daughters (3 yrs & 11 yrs).
I would be grateful for any feedback or ideas on what the next step should be. I was wondering should I get 2nd opinions first before starting on chemo treatment? Maybe there’s a chance that a different surgeon would do surgery? I also hear that Mayo Clinic offers more than just chemo treatments like radiation & photodynamic therapy.
As you can see, lots of thoughts/ideas running thru my head
-Jason
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