New to board

[marions]

L.B…..as has been mentioned most, if not all pharmaceutical companies have a “compassionate use” program for which you may or, may not qualify depending, on your household income. Also, there have been many discussions regarding insurance approvals/disapprovals. You might find something pertaining to your situation. Welcome to our site. I am happy that you have found us. Good luck and please, stay in touch. I don’t think that there is much in regards to this cancer that has not been discussed on this site and, everyone shares freely their experience in order to benefit the next person with all the support imaginable.

[cherbourg]

L.B.

I just lost my Mom on April 3, 2009 to CC but she was treated at Duke. Her oncologist was Dr. Michael Morse. When Mom was diagnosed back in May 2008, she was Stage IV with mets to the lungs. Chemo was her only option.

Since there is no “official” chemo for CC, we were concerned when they wanted her to be on Nexavar and Xeloda as well as Oxyliplatin and Gemcitibine. I was very pleased to hear the following from her doctors…

“I prescibe what my patient needs and then let the insurance company sort it out. If they don’t pay then the drug companies have means to cover the drugs and failing that there is always the Duke endowment, but my patient always comes first”

All of Mom’s meds were covered by one or the other. I truly believe her treatments allowed her much more time than we thought she might have. She was able to dance at her only granddaughter’s wedding in December and see the birth of her second great grandchild in October.

I haven’t posted much since losing her and today is especially hard as it is the first Mother’s day without her, but I just wanted to try and help put your mind at ease.

You are in my thoughts and prayers.

Much love,
Pam

[l-b]

Thank -you all for your quick replies. It is very comforting to know I have some where to reach out to. I am sure the website will help my family and I. Right now I am just in limbo of not knowing what the MDs. will come with a solution for me. I think my CMC (Blumenthal Oncology Center) is worried about my size I weigh between 89-96 lbs. I am only 5 ft. So they believe the dosing for me will be difficult. Duke MDs. are willing to go more aggressive with the treatment. Then the Issue of my Insurance covering certain treatment of CC.

[walk]

Hi LB

The folks at CMC are great. My dad has CC and has been to docs in Winston Salem, where he lives and in Charlotte where I live. CMC is fantastic to work with on insurance. Please email me if you have questions. I’d b e happy to chat on the phone too if you’d like.

Good luck with your treatment!

Jan

[lainy]

Hello L.B. and welcome to the best little club in the world that no one wishes to join. You just ask away, we all understand how frightening this is when you first hear of it. I mean, who has ever heard of a disease with such a long name?? Here you will find the most courageous, loving people in the World. We are glad you found us and like I said, ask, advise or vent, we are all here to help each other.

[devoncat]

LB
Welcome to the board. I had my surgery in January 2007 and had great scans for awhile but now the beast is back so I know how you feel. Have you looked into cyberknife?

Carol’s husband was treated in NC and talked to several doctors in the state and she might be able to offer some advice about which hospitals.

If you have any specific questions, please ask. We are a very support group and really do our best to help each other. You will not find a better group of people, so ask away.

Kris

[gavin]

Hi L.B. Welcome to the site, although I’m sorry that you have to be here. I know that you will get loads of support from everyone here and I’m certain that you will get the answers to any questions you will have.

Wishing you all the best.

Gavin

[l-b]

I was diagnosed with intrahepatic cholangiocarcinoma in March 2008. I had a partial resection of the liver to remove the tumor on May 22, 2008 at Duke Hospital with Dr. Clary. They also removed my gall bladder and several lymph nodes. There were slight positive margins after the surgery so in July, I started 5 and 1/2 weeks of daily radiation with a once-a-week cisplatin treatment. I had these treatments at Carolina Medical Center in Charlotte under the supervision of Dr. Carrizosa and Dr. Haeke. After completion, I had one clear scan in January 2009. In April 2009, my scan showed three small lesions on my liver.

They have decided that I am not a candidate for ablation because of their proximity to the lung and biliary ducts. And they are suggesting I start a program of GemOx.

Right now we’re waiting to find out the exact course of treatment and where we will be doing it (Duke or Carolina Medical Center). I’m worried about insurance covering the treatments so we’re working on finding that out now.

Most likely I will be posting some questions when I know a little more about the course of treatment we are going to take.

Hoping this site will be able to offer me some support and information.

L.B (in Charlotte, NC)

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