• From: Henderson, Nevada, USA
  • Registered: Mon, 11 Jun 2012
  • Posts: 28

Topic: Help...depressing news

My dad just got his scan results back about an hour ago and the tumors are shrinking inside liver but not out.  He is off the clinical trial at U of M because of the lack of shrinkage on outside tumors.    The next option is Folfox with a 30% success rate or two phase one trials with a 5% success rate. 

My suggestion is for us to seek treatment elsewhere.  I want to go to MD Andersen.  What do I do? What don't I do?  Where do I begin?  Any info would be appreciated. 

Hurting and Praying,

Suzy

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: Help...depressing news

Dear Suzy, it is a bittersweet post. Glad about the liver tumors shrinking not glad about the rest and I agree a 2nd opinion is in order. I think there are 2 ways to approach MDA. You could just call and ask how to proceed or you could find out where and who to FAX his Test results to for an opinion. There are no right or wrongs, listen to your gut it will guide you. Best of luck and please keep us posted! Be strong!

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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,500

Re: Help...depressing news

Dear Suzy,

Sorry you didn't get the news you were hoping for. Did your Dad start seeing Dr. Zalupski yet? Lauren was taken off the clinical trial as well when it didn't work anymore for her. But if tumors in the liver were shrinking, why did they take him off? Were the outside ones growing? I don't know who your Dad's doctor was before, but Dr. Zalupski is wonderful and we think he is doing everything in his power to help Lauren. I was hoping you would feel the same. I wish you all the best in searching out all of your options. I wish you, your Dad, and the rest of your family all the best.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website