In the middle of this nightmare and seeking info.......

KathyD,
I am sorry for the disappointing chemo results. I dont lnow the stats but have read that every persons tumors may respond differently to a given chemo. I can't imagine all the emotions you're going through and can understand why you're scared. Many have stabilized even with similar stage as you so please dont lose hope!  I don't know about MD Anderson in Orlando but know the one in Houston has great reputation so Id assume the ine in FL also would. Just want to offer moral support. The Gem/Cis didn't work for my sister either (well, mixed results; slt shrinkage of tumor in liver but growth of one in portal vein). Could be she wasnt on it long enough to get benefit because they dont let you have it if blood counts get too low (that happened several times). It helps to focus on next plan of action. For my sis it's radioembolization and maybe different chemo or chemoembolization later.  I know many have had success with smaller tumors using stereotactic radiation. I'm glad your Drs are quickly shifting gears. the ling-timers on this site always rec 2nd and 3rd opinions. Hang in there!

kathy....not everyone responds to the gem/cis combo; that doesn't mean though that another chemo won't work for you.  Statically, yes, the average response rate to chemo hovers around the percentage your doctor had mentioned however; these figures are calculated based on a large patient population  some of whom respond great whereas others not at all.  But you are not a statistic dear Kathy, you are your very own person with your very own response and there is not reason to believe that the next, recommended regimen won’t achieve positive results for you.   
Also I wanted to mention that scans only detect cells greater than 1 cm in size, as the plate of the scan itself measures 1 cm in thickness.
Until others can chime in I thought to attach some previous postings.

http://www.cholangiocarcinoma.org/punbb … 015#p41015
http://www.cholangiocarcinoma.org/punbb … 047#p48047
http://www.cholangiocarcinoma.org/punbb … 438#p50438

Hang in there, Kathy. 
Hugs,
Marion

Sorry, by the time I sent this off Susie, Willow and Pam had already posted.  Forgot to mention that you might want to inquire as to how many CC patients have been treated at MD Anderson, Orlando. I would not specifically focus on the name of the institutions rather I would inquire about the volume of patients seen by a specific oncologist.
Please, keep us posted.
Hugs,
Marion

Hi,
Yes, gem/ cis response rate is average about 30%.
5FU/ oxaliplatin will be better tolerated and may provide stable response to your tumors. If not the next step will be clinical trial involved targeted agents.
Where are you be treated and do you know what kind of bile duct cancer you have? ( in the bile duct outside the liver or inside the liver ).
God bless.

Hi,
With your description, I will guess you may have hilar extrahepatic CCA.
I am not a doctor, but for some unknown reason, 5FU works more effective than intrahepatic CCA which I have.
I will suggest to get another oncologic opinion after the result of the two month trial of the 5 FU / oxaliplatin .
God bless.

Good morning everyone.  Can't thank you enough for responding with your personal stories with this awful disease.
Just had first dose of Oxaliplatin and at home 5FU for 48 hours.  Wow......never thought the cold would be this painful and much of the time I am using a glass that is at room temperature.  My fingers and throat tell me if it is not at least a bit warm.  Cottage cheese this morning warmed did not go down so well 
Had to find something funny about now.
Everyone has been so hopeful and so was I, but I am a little shakey right now.  Hope this blows over....I am so weepy...and I think so shocked. It seems it is almost like playing Wack-A- Mole.  They  might get the tumors to shrink one place only to have them pop up in another.  My oncologist refused from the start to give a stage to my case....said he does not agree with doing that altho I am sure it is in my records.  My stage must be 5,6,7 ??  Maybe I don't want to know every detail.  He never gives survival months and said we will just keep plugging along until we find the right mix, changing as often as we need to.
Should I keep posting in this area, or move to another area of the discussion board? 
God bless you all.........

Yes, I am being treated at Froedtert Medical college/hospital.  good people. Any hints on the "pins in the fingers" ?  It is awful and this is my first treatment.  Gloves actually don't help....I tried leather..no go.....even the countertops hurt.Thank you everyone!!  p.s.  made some oatmeal this am....went down great.