Topic: New to website

I to am knew to this website and have truly enjoyed hearing everyone's stories.  My 37 year old husband became ill on October 7, 2006 with flu like symptoms.  A week later his urine and stools became discolored which we attributed to dehydration because of the "flu".  Three days later he became jaundice.  Of course, we then went to the doctor who thought he may have hepatitis.  They did some blood work and it came back that he did not have hepatitis but the blood work showed that he had high liver enzymes.  He went to the hospital for a ultrasound of his gallbladder (they assumed he had gallstones in his bile duct).  The ultrasound showed multiple gallstones and an inflammed gallbladder.  We changed Scott to a low fat diet and all of his symptoms and sickness went away. 

We went to the hospital on November 1 to have the gallstones removed during an ERCP.  The doctor found no gallstones in the bile duct but what he referred to as a stricture. A temporary stint was put in to allow the bile to flow.   He told us it was a very serious condition and that we would need to go to Mayo Clinic, KU University, St. Louis or some other major hospital.  This was not something that could be taken care of in a local hospital. We left our local hospital not even thinking that it was cancer. 

We were given an appointment for November 3rd. with Dr. Romano Delcore at Kansas University Medical Center in Kansas City, KS.  He immediately began talking about pancreatic cancer.  We were totally shocked.  We had come for gallstones and an inflammed gallbladder.  I should say that my husband's family has a large history of pancreatic cancer.  His paternal grandmother died of pancreatic cancer as did her father and two syblings.  Another brother died of gallbladder cancer and the other died of a form of leukemia.  We had the "Whipple" speech and walked away feeling down and out.  We then were sent for a EUS (endoscopic ultrasound) which showed that my husband had Stage 3 pancreatic cancer.  The cancer was in his bile duct, pancreas and at least one lymph node but not to his liver.  How fast life can change in one month!! 

We went back to Dr. Delcore's on November 20th.  Dr. Delcore said he was not sure if he would be able to remove the tumor.  The ultrasound had shown the tumor very close to the portal vein.  Also, if he had gotten in there and found that it had actually spread beyond those areas he would not be able to resect the tumor.  In that case he would bypass the tumor to remove the blockage and close Scott up.  Dr. Delcore said he would know about 4 hours into the surgery.  Scott had then asked him what he could expect for a life expectancy.  Flat out, Dr. Delcore said about 18 months if they are unable to remove the tumor.  I walked out of his office thinking unacceptable.  We are 37 years old and have two children (9 and 12) we have a lot of life ahead of us. 

On November 28, Scott went to KU Medical Center for the Whipple procedure.  I sat in the waiting room receiving periodic updates as to what was going on.  Finally, at 1:25 the nurse came out to tell me that they were going to procede with the surgery.  Dr. Delcore felt confident in removing the tumor and surrounding effected areas.  Scott came out of surgery at 6:45 p.m. almost 10 hours after he went in.   I was able to talk to him around 9:00.  He looked great and even sounded good.  He called me the next morning at 5:00 and just wanted to talk!  He had a rough couple of days trying to get his pain medicine right.  He was up and walking around the day after his surgery and walking about 1 mile a day two days after his surgery.  He was determiined to beat this!!  Our doctor had told Scott prior to surgery, "the bed is your enemy you want to be out of it."

A week after his surgery, Dr. Delcore came in and told Scott that Christmas had come early for him.  It turns out that he has Bile Duct cancer not pancreatic.  We know that it is still not good but better than pancreatic.  They also did find 4 malignant lymph nodes out of 12.  They were the 4 closest to the tumor.   Scott was released on December 8th. 

We went to Florida for three days on December 15th.  He felt great but was a little tired.  We had a great Christmas and are thankful for all the days that we have together. 

Thursday, of this week January 18, 2007 Scott received his first chemo. treatment.  They are going to use Gemcitabine once a week for two months.  He will then begin radiation for six weeks along with a chemo. pill (5FU).  He will then go back to 3 weeks on and one week off of the Gemcitabine for three months.  We are not sure what effect this will have, but we do know that we are young and that we will do whatever it takes to beat this terrible disease.  We have a lot to live for!! 

My husband has not missed a day of work since getting sick in October except for his days in the hospital, the day of his EUS and ERCP and the month he had to take off of surgery.  To see him, even before surgery you would've thought he was just a healthy guy.  He continues to work and feel great.  I guess that is what makes this all so "Wrong". 

I would definitely recommend Dr. Delcore for anyone needing the Whipple.  He does approximately 40 surgeries a year.  The staff at KU Medical Center was wonderful.  They have given us hope and promise for the future!!

Re: New to website

I hope your husbands treatment continues to go well. He sounds like a fighter!! Best wishes to both of you, and I'm sure, like evryone who finds this site, you will find it helpful, compassionate and informative!

Re: New to website

crider - keep reading this board, as well as anything you can find pertaining to cholangiocarcinoma.  I don't mean to alarm you, but this is a horrible cancer and there is practically no research on the subject.  You'll find that many doctors will recommend many different courses of treatment.  If you just look around this board, you'll see that almost every patient is doing something different.  Some caught the cancer early enough to be able to have surgery.  I believe the established course of treatment after surgery is just to monitor periodically for any return of the cancer.  But some patients want to go a step further and follow up the surgery with chemo.  For those who were not diagnosed until after the cancer had already spread too far, surgery was not an option.  And you'll find those patients on here have done everything from altering their diet, to hitting the tumors with chemo and radiation. 

The reality is that there is no prescribed treatment for this cancer.  Your doctor can throw ideas on the table, but he/she does not really know the best course of treatment because the science just isn't there yet.  In the end, the course of treatment is completely up to your husband.  So I highly recommend that you both start reading, and keep up with educating yourselves.  And to that end, I'd also recommend getting more opinions from doctors who deal with this cancer routinely.  No doubt your oncologist at KU has already contacted other oncologists from around the country to get them to weigh in on your case.   But that should not mean that you don't follow up with more doctors on your own.

30-something caregiver

Re: New to website

Hello Crider,
It is heartbreaking to hear about all of what you and your family has had to deal with. My father went through months and months of testing with inconclusive results. It is frustrating to know that something is wrong, and Dr's are telling you that they can't figure it out. Well when we finally did it was too late, my father passed away 5 months later. I'm not writing this to be a downer....I am writing this to tell you that you do need to educate yourself and not rely on what is told to you. This is a rare cancer and there aren't a lot of doctors that could consider themselves experts in cholangiocarcinoma treatments. It also sounds odd to me that they could remove tumors without noticing right there and then that it was cholangiocarcinoma and not pancreatic! You are lucky in a way because I am quite sure if they knew it was CC they would not have performed surgery. CC patients with metastatic spread to liver, pancreas and lymph nodes are not surgery candidates.  I am saying these things from personal experience with my father, and the fact that I am a veterinary student at Cornell, and have studied similar diseases in animals.  I really hope that chemotherapy helps your situation, my father was not a candidate for radiation, but he did do Gemzar, and he had the best quality of life when he was on Gemzar. His oncologist however, wasn't happy with the lack of tumor shrinkage and changed his chemo to 5FU which put my father in the hospital 2x's before he had to stop chemo completely. Once again keep yourself informed of new treatments and even alternative treatments. There are a few people that have blogged on here before that have had wonderful success treating with alternative methods.
I wish you all the luck in the world...this cancer is a terrible monster and it seems to take the most undeserving of people! Just remember to cherish every moment you have and leave no chance for regrets.
Take Care,
Ketzey

Re: New to website

Hi crider

I agree with most things that ketzey said , however I do have to disagree with the view that if the cc tumour is in the liver , a resection will not be offered , my husband had a very large tumour approx 9cm by 10 cm ,with a clear diagnosis from biopsy of cc , and we found a surgeon in Leeds UK who operated , it was considered a primary tumour not a met and was near the portal vein .
I would also add to ketzeys words of caution , it was a very intense long operation which due to post op complications , infections etc , he did not survive , the actual removal of the tumour was sucessfull !! I too do not want to be too gloomy and I do not regret the fact that jon had the op and we had long discssions about the danger before , but it pays to be aware of all the implications of this horrible cancer and do lots of research , this site is a valuable resource for this

Alison