Mardi Gras is March 4, by the way.

Hi y'all.  My husband's lymph node biopsy results came back yesterday - nothing but necrotic debris.  The oncology team feels 95% certain that his lymph nodes are cancerous.  We will try to confirm via PET scan.

This means he is no longer a candidate for Dr. Chapman's liver transplant protocol, so he will start palliative Gem/Cis as soon as possible.

My question for those who have been on it is, how did it affect your ability to carry out daily functions?  Were you still able to work, play, travel?

The reason I ask is that taking the kids to Mardi Gras in New Orleans is on his bucket list.  He is doing very well right now, still working and doing all of his normal activities.  If he starts chemo this week, Mardi Gras week will be one of his "off chemo" weeks, following his third round of treatment.  Will he be up for a 14-hour car trip (with overnight stop in the middle) and Mardi Gras fun?  (We have an electric scooter we can bring if needed.)  Or should we expect that the Gem/Cis will make him sick and weak and not able to travel?

Thanks.

Mary

My husband (54) has cc that would be resectable if he did not also have cirrhosis.  The surgeons believe that the resection would not leave him with enough viable liver to sustain him.  So, we are looking at palliative therapies, with a long-shot potential of liver transplant down the road if we can stabilize the tumor.

Here at Duke, they had him scheduled for Capecitabine and radiation for 5.5 weeks.  We put that off for a few weeks so we could travel to MD Anderson and meet with Dr. Javle.  He recommended not doing radiation at this time, as the tumor is located along the left branch of the duct, partially up the right, as well as the common duct.  He feels that irradiating this large of an area would negatively impact the surrounding tissues (liver, pancreas, intestine, kidney) and he recommends IV chemo with Gem/Cis and re-scan in 3 months.  He said, if we can show containment or shrinkage of the tumor that can be maintained over a long period of time, John may be able to appeal to the liver board under their "extended criteria" for transplant and possibly get a "second tier" liver.

Dr. Chapman said we should biopsy the enlarged lymph nodes in the abdomen, and if those are clear, he would want to see John in person to evaluate him as a potential liver transplant candidate (Dr. Chapman has not seen John - just his records).  Dr. Chapman's protocol seems to consist of chemo/radiation followed by transplant.

John is having the biopsy on Monday.  If the nodes are clear, I'm not sure what to do.  Going to St. Louis would delay treatment at least another week (we've already been delayed 3 weeks due to the trip to Houston and the holiday.  He was diagnosed in late October).  I'm thinking, if the nodes are clear, I would talk to Dr. Chapman and discuss their protocol vs. Dr. Javle's and see what he recommends.

Any advice from those of you who have been through this?

Thanks,

Mary

4

(21 replies, posted in Introductions!)

Margaret,

I'm so sorry to hear what you've been through.  My heart goes out to you and your family.  I can relate, as my husband, John, is 54 and officially diagnosed on November 1.  We also have young children - 9 year old twin boys.  We are currently exploring all treatment options, clutching onto any ray of hope we can find.  This disease is so terrible and so quick, it does make your head spin.

I just wanted to welcome you to the site and add my support and love to that of the wonderful people here.  Feel free to email me if you'd like to talk.

Mary

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!

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.

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, 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.
www.caringbridge.org/visit/johnsbailey

Thanks.

Mary

9

(45 replies, posted in Introductions!)

Hi Dakotabeann,

I am new here and have not yet posted an introduction, but I wanted to let you know that, based on some postings I read here, I called Dr. Chapman's office and mentioned that I saw him listed on the advisory board for this site.  They said he would provide a second opinion at no charge.  I would just need to send the medical records and images on disc via FedEx and he and his team would review them for me and provide their assessment.

I am planning to do this as soon as we have liver biopsy results.

Hope this helps.

Mary