My husband had the Whipple surgery in November of 2006.  At the time, we thought he had pancreatic cancer.  After the pathology report came back, we found out he actually had bile duct cancer.  We knew the odds of survival were not much better but remained optimistic.  I am happy to say that Scott has beaten the odds.  This summer, Scott had surgery to remove a cancerous tumor in his lung.  We were told with 99% certainty that this was not related to the bile duct cancer.  Scott has beaten bile duct cancer and lung cancer but cannot gain any weight.  In the last two years he has lost 50 pounds.  We have been to a doctor at KU who told him to eat more fat even though the fat levels in his stools were off the chart.  We went to the Mayo clinic this summer and were told that he needed to be on a low fat diet and that he probably had food allergies.  We have tried low fat diets, lactose free diets, and gluten free diets.  We have increased the amount of Creon that he was taken only to be told that he was taking to much.  He has taken several cycles of Xifaxin to kill off the bacteria overgrowth in his intestines.  Nothing is helping!!! We are not sure what to do.

My husband is 44 years old.  He is 6'1 and weighed 220 pounds in 2006. Today, he is 135 and looks like a little old man.  He is malnourished and spends most of his day in the bathroom.  It doesn't matter what he eats or how much he eats.  Everything goes right through him.  There have been several nights that he has said he hopes he doesn't wake up.  He is sick of being sick.  We are looking for any help that you have to give.

2

(14 replies, posted in Good News / What's Working)

Dette- I am hoping that you still check this website.  I am wondering how you are doing since it has been three years since your surgery? 
Cathy

Lainy, 

I find  alot of hope in your e-mail.  I found this website a week ago and was eager to share my story and talk to other people who knew and felt what I was going through.  However,  after sharing my fairly positive experience I haven't haven't had any responses.  I began to feel like you perhaps guilty that my husband had a good experience. 

I worry every day about what is going to happen and how we will deal with it when/if it does return.  I read a post from Rhonda and her husband also had the Whipple surgery two years ago.  He had been doing well until recently.  He has begun to have problems.  I just found your post and am encouraged by your positive reports a year after your husband's surgery.  I guess I am dealing with this through denial.  Hoping that since the surgery was a success our nightmare will be over in 6 months after the treatments.  I want you to know that I  definitely find hope in your posts and wish you and your husband the best of luck.   

Cathy

4

(5 replies, posted in Introductions!)

Rhonda,

I am sorry to hear about your husband.  I to am going through the same thing.  My 37 year old husband was originally diagnosed with pancreatic cancer on November 13, 2006.  After his surgery, (whipple) we were told he actually had bile duct cancer.  I am wondering were they able to remove all of your husband's tumor and leave clean margins?

We were told that Scott's surgery was a success.  They were able to remove the tumor. His tumor was in his pancreas, bile duct and 4 lymph nodes. 
Scott began chemotherapy (Gemicitibine) last Thursday.  They are given him the largest does possible due to his age and relatively good health.  However, he was not able to have a treatment this week because his white blood cells were so low. 

We continue to main optomistic but after reading your story am not sure if we to will be going through the same thing.  It is nice to have someone to talk to that knows what you are going through.  We to are young and feel that we have a long life ahead of us.  God Willing!! 

Cathy

5

(20 replies, posted in Chemotherapy)

Joyce,

As I said my husband had his first round of chemo on Thurs.  along with having his porta-cath put in the sameday.  He was a little short of breath on Friday and body aches all over.  He felt a little better yesterday, but is not feeling so well today.  His bones all ache and he says he feels like he ran 10 miles.  Hopefully, things will get better.  I am concerned since this is first treatment.  We will definitely continue to keep fighting and maintain our positive attitudes.  It is nice to talk with someone who understands what I am going through.  I moved my original post to introductions.  I think I had entered it under the wrong topic. 

Cathy

6

(4 replies, posted in Introductions!)

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!!

Andy,

My husband was diagnosed with Stage 3 pancreatic cancer on November 13th. They said the cancer was in his bile duct, pancreas and one lymph node.  He had the Whipple on November 28th.  They removed his gallbladder, 2/3 of his pancreas, 5 cm. of his intestine, duodenum, 12 lymph nodes and common bile duct.  The pathology report came back bile duct cancer not pancreatic cancer.  His pathology report reads: Tumor location; wall of common bile duct.  The reports states that the tumor does not apprear to invade the common bile duct.  That the pancreas is sectioned to reveal a 2.5 X1.5 X1.5 cm white firm tumor.  Of course, our doctor expressed his concern to the pathologist as to how this could be bile duct and not pancreatic and the pathologist stuck with his findings that the cancer cells were bile duct.  Of course, we were told that you could get 10 pathologists into a room and that a few may think it is pancreatic.  That is why pancreatic cancer and bile duct cancer have sometimes been misdiagnosed. 

We are just hoping that the diagnosis of bile duct instead of pancreatic can give us more time for someone to find a cure!! 

Cathy