My wife’s extrahepatic CC
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Eli, you are an awesome advocate for your wife! I hope she is feeling better and can resume treatment soon. Stay strong and come back often to this board. It is a great support. Best wishes to your family.
Dear Eli, welcome to our wonderful family where you will find the most courageous and caring people the world over. I am so happy you posted as you will find our site a very helpful tool in your Wife’s fight against CC. Use us to vent, ask or advise, anything goes. Once again, I am so befuddled by all the new younger CC patients we are getting. It just breaks my heart. Sounds like you both have an amazing attitude and that is exactly what is needed along with a ton of love. Please keep us posted and I am sending the best of luck for a clean scan on December 2nd.
Hi Eli,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your wife. But I am so glad that you have delurked and posted now as you have come to the right place for support and help, and I know that you will get tons of both here from everyone.
Thank you so much for you post and for going into as much detail as you have about your wifes diagnosis and treatment to date. And no, your post does not sound dry at all and unfortunatey we all know too well the emotions that are involved day to day when dealing with this horrible disease. We certainly know where you are coming from with that.
That is good that your wife was able to have the whipples surgery, many of our members and their loved ones have had that surgery as well. Where did your wife have the surgery? I’m sorry to hear that your wife had such a tough time with the Chemoradiation and given that she had such a tough time it is probably a good idea to hold back on doing the Gem/Cis right now. Hopefully by mid December she will be feeling so much better and will be ready to start the chemo then. Apart from the nausea, how is feeling right now?
If you have questions then please do not be afraid to ask them. We can’t promise to have all of the answers but we will do our best to help in answering them for you. I will keep my fingers and everythjing crossed for you both with your wifes upcoming Ct scan and please let us know how she gets on. Looking forward to hearing more from you and please know that we are all here for you and we care.
My best wishes to you and your wife,
Gavin
Hello everyone,
I’m a long-time lurker. My wife is currently in between treatments… I have time to write the introduction post.
My wife and I are both 44. Our daughter is 13. We live in Ottawa, Canada.
My wife’s symptoms showed up in the middle of April 2011. Very strong abdominal pain followed by a whole-body itch a few days later. We went to ER on April 18th.
ERCP was done the next day. The doctor found a tight stricture in the intra-pancreatic portion of the common bile duct. He inserted a temporary stent to releive the obstruction. He also took a brushing biopsy. The biopsy came back as “suspicious for adenocarcenoma”.
The remainder of April and May were spent on doctor consultations and tests. CT, MRI, EUS. We signed the consent to do Whipple early in June. The surgery was done one month later, on July 4th. (Canadian healthcare doesn’t move fast.)
The surgeons deemed Whipple a success. They thought they took the entire tumor out.
Pathology report came out three weeks after the surgery. The report confirmed stage IIB extrahepatic CC (T3/N1/M0). The tumor extended over the entire length of the common bile duct. It also invaded outside the duct wall into pancreas. 2 out of 15 lymph nodes were positive. Surgical margins were microscopically positive where the surgeons cut the bile duct.
My wife’s incision got inflamed while she stayed in the hospital. The surgeons had to reopen the inflamed part before they sent us home. This open wound took almost 2 months to heal, causing a delay in the start of the adjuvant therapy.
Due to positive margins and positive nodes, the oncologists recommended 5FU chemoradiation followed by additional course of GemCis chemo. This is in line with NCCN treatment guidelines.
Chemoradiation started on Sept 12. 28 days of radiation, 1.8Gy daily fractions, for a total dose of 50.4Gy. 5FU was infused continuously around the clock concurrently with radiation. Chemoradiation ended on Oct 20. The last few weeks were very HARSH. My wife experienced pretty much every single side-effect in the book, some of them very severe. One month later, she still gets bouts of nausea almost every day.
My wife was scheduled to start chemo 3-4 weeks after the end of chemoradiation. Given her condition at the end of chemoradiation, our oncologist decided to give her a longer break. She is doing a whole-body CT scan on Dec 2 (next Friday). If the scan is clean, she will start chemo mid-December.
(I know my post sounds exceedingly dry. I decided to stick to the facts and leave emotions out of it. I can’t begin to describe the daily agony of dealing with this horrible disease.)
Finally, a big THANK YOU to the kind people who keep this board up and running.
— Eli
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