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need answers for dying mom

My mom has small cell lung cancer.  She had much stomach pain and I thought it was the lung cancer spreading.  A visiting nurse came to the home and said it was something else.  We rushed her to the hospital.  They said she had pancreatitus.  They ran some tests and her enzyme levels were high.  They then said she had pancreatic cancer.  They based it on the fact that: A.  She was not a diabetic, B.  She did not drink alcohol, C.  She had her gallbladder out 2 years ago, therefore it must be D.  Pancreatic Cancer.  They did not find any tumors with a CAT scan.

My mom
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Avatar universal
Dear Diane,
My husband came home from the hospital today. Pancreatitus is subsiding but he needs to have the tubes place into his bile duct to drain the bile out. I took your advise and looked into the Cleveland Clinic and you are absolutlely right. I will call and make an appointment tomarrow..they said they can take us within two weeks.  My husbands Doctor agreed that they were the best but HAD A FIT that we are going there.  My husband has only one chance to have someone clean out his bile duct or place the tubes, since they are permanent.  We certainly are going to go to the BEST facility. You do not know how much I appreciate the information. Thank you,,,,I will post when we come back to let you know how things turned out. THANK YOU DIANE...Victoria
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Avatar universal
Hello again...

I have heard a lot about living donor liver transplants and there are doctors out there who will perform them, albeit probably few. It may take some research, these doctors could be in another country where medical breakthroughs are more advanced than the U.S. (Europe?) His brother must have a heart of gold, how wonderful. If I come across any info or good websites I will pass them on to you. Take care and God bless.
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Avatar universal
Dear Diane
What a nice person you are for answering my posting especially since you are going through such a difficult time. I thank you. Since both you and Cassandra spoke of second opinions I would like to tell you that since my husband was diagnosed in 12/98 with bile duct cancer, I immediately took him to the University of Pennsylvania. I've been a cancer patient there since 1992 (melanoma) and my oncologist is the best. My doctor referred us to a surgeon (who I knew already, he did one of my surgeries) and that surgeon said there was nothing he could do. People do not recover from cholangiocarcinoma. He did, however, call a transplant doctor at the University of Michigan and we went there. After a half an hour consultation he told us my husband was not a candidate for transplant since he had cancer. We came home and I called the National Cancer Institute in Bethesda to see if any trials were in progress for cholangiocarcinoma and there WAS. So we did all the paperwork and my husband was accepted into the trial..AH ha, we had some hope. We went to N.Y. and they did every test there is to get positive cytology. Three guesses.  They could not get any scan/test or other numerous testing they did on him to come back positive for tumor/cancer. I mentioned in my first posting that there were no positive pathology reports. Now our problem is that they put in 3 stents into his bile duct and they are closing up. The steel stents that they put in cannot ever come out and they are put into terminal patients. Had they put in plastic ones we wouldn't have this problem. I do not believe he has cancer. I think he was misdiagnosed. He is still in the hospital and will be released tomarrow. The pancreatitus is almost gone but he is bright yellow because one of the stents is closed. The next step is for them to put tubes into his liver with external drainage bags. This is PERMANENT.  I think they are going to schedule this for next week. My husband does not know this yet. He is only 52 years old. He is not sick. He has not lost weight. He golfs 4 times a week and 2 weeks ago won a huge tournament of 80 men. He turned jaundiced 2 months ago because of the closed stent. I swear you would never suspect he was ill except for the jaundice. His brother has offered part of his liver for transplant but no doctor will perform it. When they tell him that he has to have the permanent tubes and drainage bags tomarrow I know he will go into total depression. He has been through so much and has had such a positive attitude but this is what is going to be the breaking point. I suppose I am through venting. There doesn't seem to be an answer for our problem. If anyone has an idea I sure would like to hear it. Thanks Diane and Cassandra. Victoria
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Avatar universal
Hi,

I'm sorry to hear that your husband is so ill, sounds like he's been through a lot! I will try to answer some of your questions and hopefully ease your mind a bit.

With pancreatitis it's true that you cannot eat when you have it, but the french fries he ate wouldn't have made a difference either way. The reason "not eating" wasn't on the instruction sheet is because he wasn't expected to get pancreatitis. He got pancreatitis from the ERCP that was performed, probably because they accidentally injected the dye into the pancreas. This is pretty common after an ERCP, and VERY painful. With pancreatitis it usually subsides in 3 days, during which they will have him on I.V. fluids, pain meds, and maybe some ice chips but no food. If it persists for 7 days or more (pretty uncommon), they will consider TPN for a few days until he recovers. TPN (total parenteral nutrition) is an "I.V. food", where everything he needs nutritionally in a day will be infused through a catheter implanted into a large artery in the chest. PPN (Periferal parenteral nutrition) is basically the same thing, except that it can be infused through the I.V. catheter he already has, and the PPN solution has a lower concentration of dextrose than TPN. PPN can be irritating to a small vein and sometimes painful, so it is used on a very short-term basis. TPN can be used as long as necessary, and people can even live on this exclusively for many years.

The doctors are doing things right as far as his pancreatitis goes, and everything they told you about it is true. He will most likely recover before they even have to think about TPN. Unfortunately, Diane's mother was already very ill and there were other circumstances involved in her situation. Almost no one dies from pancreatitis alone, but it sure is a horrible couple days to go through. The "cancer" sounds kinda fishy. It's a bit strange that the doctor can confirm cancer with negative biopsies, just from "seeing it before". I would definitely not accept that and seek out a second opinion as soon as possible.

I hope he's feeling better by the time you read this! I'm sure he will be back home before you know it- asking for french fries. ;0) I will check back here if you have any more questions! Good luck and God bless.
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Avatar universal
First, I think my mom died from lack of nutrition brought on by the pancreatitis.  My mom was 75 pounds when she entered the hospital and they did not let her eat for four days.  They then give her chicken broth that tasted lousy (she made me taste it), jello, tea, and juice for breakfast, lunch, & dinner for a week after.  My mom doesn't like jello or juice.  (I don't know what she weighed when she left the hospital.)  When she got home, she would eat much less than she did before she entered the hospital.  You know what it is like when you don't eat very much, you feel weak, and I think she got weaker and weaker because of the lack of nutrition.

The Doctors told me that they don't feed someone with pancreatitis because it is inflamed and it has to settle down.  Food will make the person sometimes throw-up.  My mom threw up once the first day they gave her the liquid breakfast.  

The TPN gives someone nutrition through an IV like Cassandra explained.  (She gives great advise.)

I don't know where you live or what your resources are, but if I had it to do all over again, years ago, I would have taken my mom to the Cleveland clinic.  

If you read the letters from Shelly and Maria, they also had bad experiences with their mother's doctors.  Keep searching for a doctor until you feel confident and explain to them the reasons for your concern.  

You know, I still don't know what you should feed a person with pancreatitis.  I read you should not feel them anything high in protien or high in fat.  I did tell the Primary Care Physician 4 days before my mom died that no-one told me not what to feed my mom, and he told me it was because she did not have chronic pancreatitis and I could feed her anything.  Then he changed the subject to tell me my uncle was in the emergency room at that moment and I never got back to the subject with my mom.  

I wish you the best.  It is a tough fight.  There are some good Doctors that will help you.  Keep searching.  I pray for you and your husband.

Diane
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Avatar universal
Just wanted to say hi and thank you for your note! I'm so glad we were able to help you in such a difficult time. I hope each day will be a little brighter than the day before. Take care and God bless you!
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