1 (edited by JimS Thu, 08 May 2014 16:16:22)

Topic: New/ Advice/ Suggestions

Hello Group

It sucks, but I’m trying to be positive………..Ok I’m POSITIVE it sucks :)

I have read though some of the website, discussion boards, and was able to talk with Marion yesterday and Lisa Craine, and have been amazed by the caring and support from this community. I wanted to give you what I know so far, and ask for your experience/ advice/ tips from people you have been there and done that.

I’m 52 y/o with 5 kids at college or graduated. I live in Chicago and am being seen at Northwestern by Dr Nimeiri who is in a group with Dr Mulchay. History of Hodgkins 1979 treated with high dose mantle radiation.

-    Diagnosed on 4/28 with Intrahepatic calangiocarcinoma at Northwestern in Chicago. Main mass 7.8 x 6.6 x 5.8 cm centrally located and reaches out to both lobes. A couple satellite tumors 2 x 3 cm. Being told not resectable. MRI indicates lymph nodes are involved and bone scan this morning shows maybe/ maybe not met to the spine.
-    Scheduled for Y90 as initial treatment (due for mapping on Monday) which is still on even with the maybe spine met. Following a month later by Cisplatain and Gemzar.
-    They are sending the biopsy out for genetic markers

On my list:
-    Dr Chapman to review for surgery option
-    I’m looking for other reviews on the medical oncology/ interventional radiologist side. It feels like I need to get something going now. I tried Dr Javle through MD Anderson and you need to send reports and get there in person for any feedback, and it’s the time not the cost.
-    Keep looking for other options, but getting back to that maybe spine met and need to see how much of a game changer that is.

Chime In
-    What do think? What else should I be looking at/ for?
-    Any advice on getting 2nd opinions and from whom?
-    Feel free to ask any questions.

Thank you!

Re: New/ Advice/ Suggestions

You might try NIH, Cancer Center and Johns Hopkins while you are in the area. If you call me at 301-963-4702 I can share our experience with NIH in Bethesda, MD.

Re: New/ Advice/ Suggestions

Jim, I am excited to see Dr. Chapman on your list!! He is my hero and saved my life twice. When he told my husband he had 12-14 hours to find me another liver, Jeff (my husband) says " I knew he would, I never thought you wouldn't make it"!!
Lots of prayers for HOPE-Cathy

Re: New/ Advice/ Suggestions

We met with Dr. Mulcahy on Wednesday for a second opinion. I was impressed with how much time she spent with us, and how we'll she had prepared to meet with us. You're in good hands.