Topic: Introduction/ Cholangiocarcinoma

Hi everyone!
My name is Gary Worden and I was diagnosed with CC in Dec. of 2007. It was a small tumor located distally in my bile duct. I had a Whipple which ended in clean margins. The day after my surgery I developed an infection and was dilusional for 10 days. This resulted in my stitches ripping out and required a woujd vac for 3 months to heal my abdomen.I have had many infections,drains since original surgery, still have a drain for a leak from my pancreas and a couple of hernias.  Received partial chemo and radiation and then stopped because of continual infections.  Currently I am on Gemzar because my CA-19 was slightly elevated again.  I will have surgery in early Feb. 2009 for hernias and to repair leak.  Thanks for listening to me!
Gary Worden

Live each day to the fullest

2 (edited by JeffG Sat, 08 Nov 2008 16:14:03)

Re: Introduction/ Cholangiocarcinoma

Hi Gary...  I'm so sorry to hear all the complications you have gone through!  Wow!  And still not finished yet?  Do you know why all this happened ? This is a very unusual occurrence.  Were you allergic to something? Again this is really a rough road or should I say detour, as you are yet done.  I and all of us here on the site wish you nothing but a positive recovery real soon.  You have already had your share of ups and downs.  Your whipple stitches let loose because of the infections?  Did you have this done in Myrtle beach area?  Feel free to talk about what happened if you wish. I can imagine it was quite a trauma for you.

God Bless,
Jeff

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

Re: Introduction/ Cholangiocarcinoma

Hello Gary and welcome to the best club in the world that no one hopes to join!
At last another Whipple!!! You can look up all my posts on Whipples that my husband Teddy had 3 years ago. Look under Lainy) We were on vacation in Milwaukee when he got sick and our 2 week vacation turned in to 3 months! First Whipple was aborted after 4 hours because his pancreas was destroyed form dye that leaked on it from his endoscopy and the doctor needed to cut the head of the pancreas and could not. His cancer was in the bile duct valve. Then while the pancreas was healing he contracted a double e coli infection and was in the hospital for 9 days, the doctor then decided to do the Whipple again and this time after 8 hours it was a complete success. He had 2 tubes for drainage and on our way home a month later both tubes blew out in the plane. What a mess!!! After 2 weeks home he developed a tiny hole at the resection and went in to rehab for 1 month on nothing but an IV and the hole did heal. He was 73 and resumed work and golf! Than last April the CC returned where his duodenum used to be. He had 5 weeks of radiation and is now going to have cyber knife surgery in December to get the rest of the mass. Whew! I tried to shorten a very long story! All of our doctors had told us chemo would not work on this kind of cancer so we had decided then not to ever do that route. Radiation has worked well and the cyber knife should do the trick this time. Teddy did have a tube from the bile duct for 8 months. Nasty thing isn't it? What is your CA9-19?
Hope you are doing good, and oh yes he has had hernia surgeries in the past. Please feel free to e mail me if you wish and again welcome, you have come to the right place.

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.

Re: Introduction/ Cholangiocarcinoma

Lainy,

Thank you for contacting me!Sounds like Teddy and I have had a lot of similar problems and corrective procedures.  My CA19-9 was 49, on the very low end, but my oncologist wanted to be aggressive in treating the reoccurence of cancer cells.  My best to you and Teddy! I know what a blessing it is to have a wonderful wife and caregiver!
Gary

Live each day to the fullest

Re: Introduction/ Cholangiocarcinoma

Hi Jeff,

This will be the first time my surgeon has had to go back and fix a pancreatic leak after a whipple.  He has done about 700 of these over the past 15 years.  He really doesn't have an answer as to why I have had so many infections and complications.  I had my surgery done at Duke Medical Center by Dr. Douglas Tyler.  Great surgeon but patient's body hasn't been very cooperative in responding to treatment.  I am now having more good days than poor ones and am feeling really positive about my recovery.  I'm hoping the chemo will kill off the remaining cancer cells.  Thanks for responding to my original e-mail!
Gary W

Live each day to the fullest

Re: Introduction/ Cholangiocarcinoma

Hi Gary,  Thanks for your reply.  Glad to hear your having more good than bad days now.  Sounds like you you had top notch care at Duke. Let's hope patients's body cooperates for now on hey?  Jump in any time gary ,we love to chat  about everything if you have checked out some other section.  We like to keep on the positive note for the most part, but deal with what ever pops up.
God Bless,
Jeff

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