Re: Through my husband, i join this very scary world of cholangiocarcinom

Hi Susan,

So sorry you had to join us but we are all here to help.  I diagnosed my mom with Stage IV CC with numerous mets to the lungs, (I'm a Cytologist) so I know how hard this monster can be.  She was 76, still working full time by choice, walking 6 miles a day and involved in Church and a zillion other things.  She was diagnosed in May of 2008 and died in April 2009. 

CC is indeed a roller coaster ride.  You do seem to be doing all the right things!

I don't know if anyone has mentioned it but there is a search engine on the site.  You can query anything that comes to mind and just type it in and it will pull up comments.

We also have Dr. Giles here as well.

Don't ever hesitate to vent, rant or sound off!  We have broad shoulders and we all understand what you're dealing with!

I'm sending hugs and tons of prayers for you and your family!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan:

A bit late in chiming in, but better late than never.  My husband was 61 when he was diagnosed.  He was able to have a resection and they got all the cancer.  18 months later he turned yellow, went onto radiation, then chemo.  Sadly he lost the battle on 11/20/11.  It will be 7 months tomorrow that he left this earth.

My advice would be to live in the moment, build those memories and get lots of pictures - spend time with family.

My heart goes out to you.

Prayers coming your way.
Margaret

Re: Through my husband, i join this very scary world of cholangiocarcinom

Susan,

I am sorry we had to meet here but you will find support.  I'm not sure if you had gotten a second opinion but my father who was diagnosed with CC in May, started at Beaumont in MI and he is now at the U of M.  He has started a clinical trial and both he and my mom are very happy there.  If you google U of M clinical trials for bile duct cancer you will find information.  I will be happy to help you in any way I can.  Stay strong, and take minute by minute!

Re: Through my husband, i join this very scary world of cholangiocarcinom

To: For my dad,
Everyone is in such a different place I assume. We too went to U of M and because it is stage four with tumors in liver and lots of spots on lung, they did not have options for us. I would like to think that we are doing what we we can and not missing something. We have stopped chemo due to growth of more tumors on his liver. At a loss! 

To:  Margaret
Thank you for your kind words. We are living the moment. Planning a sailing trip to Chicago in two weeks if he has the energy to do so. We are staying in a lighthouse this weekend for our 25th wedding anniversary, compliments of my board of directors where I work! 

Still a nightmare!

Re: Through my husband, i join this very scary world of cholangiocarcinom

Pam, I will look into the search engines. My husband and I visited New Bern last fall. I have a cousin who slips a 41 foot Lagoon Cat there. Nice place.