Finally delurking – husband has nonresectable CC
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Mary-Congrats-Dr. Chapman is an amazing man. Every time I read his name, I tear up!! Please call (618-567-3247) f you would like to talk, he saved my life twice!!! I am so excited I am doing a video with Dr. Chapman, any time I can say thank you to the two strangers and doctor who saved my life, I am there !!
Lots of prayers and HOPE-CathyMary, I have everything crossed for you even my eyes! Thanks for my new word I love…..CONSIDER! I know you will let us know what MDA says. Best of luck.
Update – John was scheduled to start chemo and radiation at Duke last week, but we put it off in order to travel to MD Anderson for a second opinion. We are currently in the MDA waiting room, waiting to be seen.
Dr. Chapman talked to our oncologist and said even though Duke and Mayo Rochester would not consider John as a candidate for liver transplant because his tumor is too large, Dr. Chapman would consider him. He recommended a biopsy of John’s enlarged lymph nodes, and if they are clear, proceed with chemo and radiation under Dr. Chapman’s protocol, followed by evaluation for transplant. We will do the biopsy as soon as we get home.
That’s the update…fingers crossed!
Mary-Welcome and I am sorry you had to find us, but I am excited to tell you that I am a CC survivor, thanks to the most kind compassionate doctor, Dr. Chapman. That man will walk across hot coals and shark infested waters to save your life if he thinks there is a chance!! I know I sound a little over the top, but he saved my life twice, with the help of God, and 2 strangers!! I just got to be a part of a wonderful family and there journey when they came to St. Louis to have there CC diagnose changed from no surgery no HOPE to a resection and HOPE!! I share my story at http://www.catherinedunnagan.com under the telegraph link.
Please email me (jrdunnagan@gmail.com) or call 618-567-3247 if you would like to talk.
Lots of prayers-CathyHi,
If you never get a LIVER surgeon for a 2nd opinion. wait for Dr. Chapman’s answer may be a wise choice.
below link may helps too if interested.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10757
God bless.
Mary –
Welcome aboard the roller coaster no one really wants to ride. So sorry you had to join us. I am with everyone else on the site….keep asking questions and get as many opinions as you feel comfortable with. My husband’s tumor came from the same area and was encroaching on the portal vein but he was able to have successful surgery in June….14 hours but they said they got it all. Only one lymph node was positive. He is now just over halfway through his 6 months of chemo to follow up.
We didn’t get any other opinions although it turned out alright anyway. We got lucky. Looking back on it I guess I would have done more research and asked more questions. Although I am not sure I would have changed anything.
Good luck and keep us posted.KrisV
Mary. If I were to guess you are Saints fans?
I was given FUDR in addition to Gemzar and oxaliplatin. FUDR is a form of 5FU I think.
My feelings on the journey? Get as many consults and opinions as you are comfortable with. I love live love Dr. Fong at Sloan Kettering (surgeon) but was unhappy with the personality of my onc (Dr. Kemeny). I got good results, overall, but finally left Dr. K after 2 years for a more open, compassionate, and informative onc in another cancer center.
I believe you must also like your treatment team. It certainly helps. And of course, the more knowledgeable, the better.Hi PCL1029
The hematologist I work for is not a liver surgeon. He referred us to a surgeon, though. The tumor is at the common bile duct where the 2 branches converge. The portal vein is not infiltrated, but the tumor is causing some displacement.
Mary, WHO DAT, Dats ME posting to YOU! I think I like Sloan Kettering (Dr. Fong) or MDA or Dr. Chapman. I think you picked 3 excellent ones. Wow, they really did work fast on this. I used to do a lot of listening with my gut and I know it sounds crazy for such a monster but my gut never steered me wrong. Different eyes see things differently but absolutely you want to give John the best chance you can! I am wishing for the best and please let us know what you decide. It could end up being a great end of year for you! Good news always welcomed. You are not alone you have lots of new family here.
Hi,
Is the hepatologist that you work for is also a liver surgeon?
Do you know where is the 4cm tumor located? in the upper or lower part of the live or in the common bile duct? is the tumor compress the portal vein ?
Only if you want chemotherapy should you consider MA Anderson at this juncture.
For locally advancedCCA, Chemoradiation with 5fu followed by chemotherapy like gemcitabine is also one of the recommendation for CCA treatment by NCCN.God bless.
Hi Jason,
I did ask about that, and she said that gem/cis is generally used for metastatic disease. She said 5-FU is used for local advanced CC to make the cancer more susceptible to radiation (so they can use a lower dose of radiation.)
Mary
Hi Mary,
My understanding is that Gemcitabine + Cisplatin is the standard first line treatment. I would ask your oncologist the rationale for going 5fu + radiation instead of gem/cis.
There could be a very good reason, but I would want to be sure I understood the logic.
Best of luck,
Jason
Hello Mary….absolutely, obtain additional, medical opinions. This includes: radiologist (interventional and oncology radiologist) oncologist, surgeon. Make sure to ask the question you have seen on this site plenty of times: “how many patients have you treated with this disease?” And dear Mary, stay hopeful and optimistic; we have witnessed some incredible change of course for some of our members.
Hugs,
MarionHi, Folks.
I have been reading these posts for a few weeks when I can, but never had the time to post an introduction. Things seem to have happened so fast, it’s hard to keep up.
My husband John, age 54, was diagnosed with CC on 11/1/13. He is being treated at Duke. (Luckily, we live nearby and I work down the street from the hospital. I work with Dr. Andrew Muir, who is my husband’s hepatologist.)
The surgeon says John is not a surgical candidate because his portal pressure is 14mmHg and the degree of fibrosis in his liver is too high, which would put him at risk for acute liver failure if they did the surgery. He also said John is not a candidate for liver transplant because his tumor is too large (4cm.) This was an incredible blow, and my husband took it very hard. We have 9 year old twin boys and he really wants to be around to see them grow up!
We met with the oncologist and radiology oncologist today to discuss palliative therapy. Here is the plan:
1. We sent John’s medical records to Dr. Chapman in St. Louis for review, just because it can’t hurt to get another set of eyes on them.
2. On Monday, they will be replacing John’s external biliary drain with a metal stent.
3. On Wednesday, they will do the “planning CT” in prep for radiation treatment.
4. In the mean time, our oncologist is working to see if she can get us in to MD Anderson for an in-person evaluation and second opinion.
5. If we consent, he will start treatment with 5-FU and radiation in about 2-3 weeks.
My questions for the board are:
a) Are we doing the right thing?
b) If given the opportunity to go to MDA for a second opinion, would you go? Is that the right place?Here’s our blog, in case you’re interested.
http://www.caringbridge.org/visit/johnsbaileyThanks.
Mary
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