I am asking anyone who has had positive results with a trial to please let me know what has worked.  I have extrahepatic CC stage IV diagnosed 12/12.  I was non-resectable.  I started on Gem/Cis 1/13 and had to stop Cis 9/13 due to neuropathy. 

Gem worked for a few months and in 4/14 we added Zeloda but tumors have grown + 1 new one.  MSKCC has proposed a 2nd line chemo but also suggested clinical trial route while liver is functioning.

What have you had positive results with?  It's so hard to find trials and evaluate eligibility.  My thanks for your continuing support.  My spirits are good and I remain hopeful.

Thanks to all,Eric

Catherine, I stopped Cisplatin in mid-Sept. due to neuropathy.  Once the platinum cleared out of my system (about 90 days) I felt much better.  Less chemo-brain & fatigue.  So far the Gencitabine is working on its own.

How are you doing? 

I marvel that I am doing so well....going to NY Auto Show today with my adult daughters.  FUN!

I have been stable since I started chemo 15 months ago.  Feeling great 90% of the time.

Matt, send me an email venice711@gmail.com with your phone and I'll give you a call later today.  If you need a place to stay near NYC we have room.

I was diagnosed in Dec 2012 with stage 4 CC and am being treated at MSKCC.  Chemo started in Jan. with Gem/Cis and after 2 consecutive CT scans at 3 & 6 months the tumors have not grown or spread.  I have also had a 2nd opinion from Jefferson University Hospital who confirmed diagnosis and agreed on treatment as best available.  It has been tolerable and is working. 

Lisa is so young to have to fight this, but stay strong and keep up the great research you are doing.  Knowledge is power. 


Kris, I would love to join your meetup in New Hope.


(5 replies, posted in Chemotherapy)

I have also had problems with white cells & platelets, and Neulasta shots after every 2nd treatment (2 weeks on Gem/Cis) 1 week off have helped.  When platelets dropped too much I received an infusion of platelets, which fixed the problem.  I go for blood work the day before chemo and have never missed a session.....too much to lose.

They did reduce the Gem by 10% to try to address the blood problems.

Hope this helps.


(12 replies, posted in Introductions!)

My sincere thanks to each of you for sharing and supporting.  The will to keep on living, loving and working is very strong in me.


(12 replies, posted in Introductions!)

Pam, thanks for the kind words and sorry to hear about your daughter.  I have 3 adult daughters and can honestly say I am glad I am dealing with this instead of one of them!

I am owner of a real estate office in central NJ so it is difficult to continue working while being treated.  My team has provided a lot of support for me and my clients, so I can focus on what I need to. 

I have lost a lot of wieght, but my appetite has improved and I am able to eat nutrious foods even though my taste is off most of the time.  I have stabilized and we are happy with current situation...but I miss my glass of wine with dinner!

This is my week off chemo so if the weather improves I hope to get out a bit after snowstorm.

I have set a goal for living with this disease that far exceeds what my doctors are telling me is likely.  I believe that I can live & enjoy life and will not let statistics get to me.


Good morning.  I was diagnosed with Cholangiocarcinoma Dec 10, 2012 while in FL and flew back to NJ for further evaluation.  On Dec 26 I had surgery for resection but could not complete due to abdominal/pelvic turmors.  I am now on chemo at MSKCC (in NJ) Gem/Cis and after 2 weeks doing well.  No side effects yet and energy is returning.

I dealt with the initial shock in Dec. and handled the legal matters necessary so I can focus on living with this disease for many years.  I know that cure is unlikely but co-existence will suffice.  My family has been by my side from the start of this journey and that is my source of strength and hope. 

Not one to dwell on medical details...just want to give & receive encouragement, support and news.  We are starting to research clinical trials and orphan drugs for future treatment when/if that becomes appropriate.