Topic: Mother With Cholangiocarcinoma

Hello: My mother was diagnosed with Cholangiocarcinoma Cancer last summer and had surgery to remove the tumor. She has just learned that she has a new tumor that is seven centimeters (plus three other smaller areas) outside the liver in the space created by removing part of the liver in the surgery. She has been told the new tumor(s) is inoperable.

The prognosis is not good - six months with no treatment or if she doesn't respond to treatment. A year ever if she responds to treatment.

She just started a chemo regimine of just Gemcitabine.

She and my father are very discouraged and I want to do all I can to look into all options, as they seem to be accepting the prognosis given.

I have looked at the listings of clinical trials and plan to see if her doctor can determine if she would qualify for any. Also, looking into major cancer centers near us (we are in Kansas City) that may different things to say about what treatments may work for her. She is already very weak and tired and hesitant to travel for diagnosis/care. Does anyone have any experience with the Siteman Cancer Center in St. Louis?

We have a meeting tomorrow with the University of Kansas Cancer Center for a second opinion evaluation. Does anyone have any experience with KU and/or any suggestions on questions/discussions to have with them as we discuss treatment options?

Thanks in advance for any advice you have!

Re: Mother With Cholangiocarcinoma

Mroudebush.... Suggest second opinion or possibly third.  Also suggest some form of radiation of liver as well.  I had 3D conformal external radiations about a 1 1/2 years ago.  Scans since then have shown slight continous shrinkage, but I have had some other chemo regimens since then as well.  The radiation was done as pallitive treatment for pain but I surely believe it stopped the tumor from growing.  Some members have been to KU. I don't remember who or what results.  Please use the search above it my provide you with lot more infor.  Also click on cholagiocarcinoma above and try using the drop down menu.  It is full of information.  Sorry to hear about your Mom, but positive attitude and second opinion my real in a different verdict/perspective of your situation.  When a Doctor starts giving you estimated times of life span ,then I would shoot for the sky and go for another opinion and try radiation.  Type in radiation of liver in search an see what infor you get.  Sorry of about your Mom's recurrence.  I had liver resection and recurrence as well. Mets all over my body and organs but I'm still here.  The six to 12 months prognosis given, so far has been 9 years and 2 months.  I wish your Mom and you all the best. Please do use this site and pop down infor tabs above.  A wealth of information.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Mother With Cholangiocarcinoma

You don't have to accept one doctor's opinion as gospel when it comes to this cancer.  Every person is different and responds differently to treatment.  For some, radiation and chemo work really well.  For others, it doesn't.  I pray that your mother will respond well to treatment and that you have alot more time with her.  I wish I could give you advice on the doctors and hospitals you mentioned, but I'm out here in the Seattle area, so I don't have any opinions on the matter.

~Lisa
(dx 08/15/07)

Re: Mother With Cholangiocarcinoma

mroudebush,

   Here is a summary of what I have learned from the people on this site so far:   2nd opinion, 3rd, opinion, 4th opinion if neccessary. Not only is each case different, Doctors have differing opinions on treatment options. Listen carefully to what the people on this site have to say - they have "been there, done that". If we had not continued on with opinions, my Husband would not be going for a potential liver resection next week.

No experience with KC - but - blessings on your Mom - your parents are lucky to have you researching for them at this time.

Joyce

Re: Mother With Cholangiocarcinoma

I am in Kansas City.  And my sister has been diagnosed with cholangiocarcinoma and is currently being treated at the cancer center at KU.  She is receiving the gemzar which is what i believe is the same thing as your mother is going to be treated with.  She also gets a second chemo treatment which is xeloda and it is in pill form.   We have been informed that this is just to hold the cancer off as long as we can.  There is no cure.  My sister is 41.  Her cancer is in her liver and bones and lymph nodes.  Surgery is not an option for her either.

We traveled to the May Clinic in Minnesota and they 100% agreed with the treatment KU offered.  We see Dr. Steven Williamson.  And they are wonderful for what they have to offer.  I mean, they can't cure her but they are very compassionate and I believe are doing everything they can. 

Good luck and I definitely give KU a good recommendation.  I'm not sure there is much better here.  Please keep us updated.  I don't know why, but it was kind of nice to see someone from my area.

Re: Mother With Cholangiocarcinoma

Hi Everyone: Thanks so much for the comments. Very helpful and encouraging. Went to KU today, and their recommendation was basically to stay with her current course of chemo and then if the tumor shrinks, radiation may be an option to look at. I agree with getting more opinions. Does anyone have a suggestion for deciding where to go for 3rd, 4th opinions? I have looked at the list of cancer centers listed on this site and that is helpful, but any suggestions on ways (other than location) to decide where to go for another opinion? Thanks in advance for any input.