Topic: Help!

Help, my husband was diagnosised on December 26, 2008 with cholangiocarcinoma after feeling ill for a month.  The source was the gall bladder which has been removed.  However there is still some spots on his liver and stomach.  We began chemo the week of January 5, 009.  He will receive gemzar along with a oral treatment as well.  This is so new to me that I just feel lost.  The oncologist told us that this was not curable, however it was treatable.   The oncologist seemed very well informed.  But is there something more I should be doing?  We live in Texas and I thought about checking in to MD Anderson.  Can someone please tell me what to expect.

Re: Help!

Hello Charlotte and welcome to the best little club in the world that no one wishes to join. Sorry to hear about your husband's diagnosis. The only thing we know for sure about CC is that we do not know enough! Everyone is different. But we all feel that you get second and if needed third opinions. MD Anderson is one of the best. You will see that reading up on this helps and if you have questions just go to our search engine. As caretakers our emotions run the gamut of being totally stunned to becoming the best patient advocates.
I started a new post to you so that it would not get lost. Stay strong, real strong and keep us posted. We are here for you to ask and to vent.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help!

Welcome Charlotte,

I am so sorry that you needed to become a member of our little club, but thankful that you have found it as it is the best place to be when dealing with this horrible disease. As you will learn, this cancer seems to treat everyone differently. What works for one does not work for another. Some are very successful with treatment & some are not. My husband was one of the unlucky ones. By the time we knew what we were fighting it was already too late.  Many on this site are being treated and doing well.  All you can do is take things one day at a time. Ask a lot of questions & do your research. Second, third & sometimes even fourth opnions can be helpful.  You will find that everyone on this site is more than happy to share what they can. The knowledge & support on this site is just remarkable. I am so glad that I found it & I know that you will be too.  I will be hoping for the best for you & your husband on this journey that you really did not want to take.  No matter where it takes you, know that you can come here any time & get all the help, support, guidance, strength & comfort that you need.

Take Care,
Darla

"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: Help!

Charlotte,
If you go to new member David S. I explain what my battle was/is like. I can tell you all my doctors were trained at MD Anderson. I hope you and your husband win this battle.

Re: Help!

Charlotte,
As other members said, I'm sorry you had to join this club but it definitely consists of some of the finest people you will ever deal with. And as Darla said above, what chemos or treatment regimens work for one person do not work for another.  But I will tell you my wife's story because the oncologist who gave her a chemo regimen that worked beautifully for her for 8 months is in Texas as you are. 
My wife was diagnosed Jan. 1, 2006 and despite her outstanding physical condition the prognosis was poor.  This included a prognosis from of the major cancer centers in the nation. 
We were led to Dr. Carlos Bacerra at U.S. Oncology at the Sammons Cancer Center of Baylor Medical Center in Dallas.  He is a gastrointestinal cancer specialist and recommended chemo with Gemzar and Oxaliplatin which was administered by one of our local cancer centers in Albuquerque.  It worked wonderfully for 8 months, shrinking the tumors and making her a candidate for surgery.  By the time we could have more specialized CT scans made and sent off to two out of state doctors that we were considering to do the surgery, the cancer adapted to the chemo and began growing again.  Surgery could not then be performed and we were not able to stop the advance of the cancer.  I lost her in November of 2007. 
If you want to consider contacting Dr. Bacerra, the phone number is 214-370-1001 and the email address is www.SammonsCancerCtr.com
I also know of people with great things to say about M.D. Anderson as well.
Considerations such as your location and insurance are things you will be looking at as well.
I hope the very best for your husband and may God Bless Both of You.
Sincerely,
Davidh

Re: Help!

Charlotte,

We all know exactly what you are feeling. The best advice I can give is to read this website. The treatment options are limited in general: transplant, surgery, chemo, radiation, but broader specifically with many kinds of chemo and you just have to find what works, for example.
This site has provided me with a quick education, so I knew what to ask and what doctors to consider. Much is dictated by the size and location of the tumor(s).
The biggest piece of advice I can give is to be your husband's advocate. Start a folder or notebook and keep copies of everything and notes of what you read. I don't know your age, but if you have children who can help you, involve them. The onslaught of doctor visits, treatments and info can be overwhelming and it helps to have two set of eyes and ears.

Please keep us informed. Best of luck!

Jan