Pancreatic Cancer Support Group

Hi, My twin sister had a whipple in Oct of 2007. She had her gallbladder out 4 months before. Continued to have pain and to make a long story short she had a ercp at the University of Chicago. They found out she had a genetic defect of the pancreas called a divisum. We are twins but I do not have the defect, as they made me have it checked out as well. They did the whipple and that is when we found out she had stage 2 cancer. She had adenocarcinoma of the pancreas. There are different types of pancreatic cancer. My twin had gotten down to 92 lbs before the surgery. She was already a diabetic before the operation. I am a nurse (oncology RN) and stayed with her at the hospital. She was there 11 days. She had a pancreatic drain and a jejunostomy tube. We had to irrigate both tubes daily for 6 weeks. She was able to eat very little when she came home so she did not have to start tube feedings in the j-tube. Her incision did open up 4 days after going home and I had to pack it twice a day for 4 weeks. She took insulin 6 times a day at first. Now.... she is doing very well! She took 6 months of gemcitabine (gemzar) and only her Hemoglobin went down very low a couple of times and they gave her shots to bring up the counts. She also participated in a trial for 1 year. They gave her a shot in her leg very 2 weeks. This was a vaccine. The vaccine was given in the hopes that she will fight off any circulating cancer cells. The trial ended in May. She goes to the University of Chicago every 2 months for blood work and a cat scan. At this time she has no other tumors, or lymph node mets etc. She is back to work at the school and doing great. Although my sister has always been small she is back to 117 lbs and takes insulin before she eats and it is very controlled. She is very religious and takes one day at a time and she feels blessed for each day.
I hope you have a great group of MD's. Do you have family for support and someone that can take you for appointments and help you out? I can email back and forth with you. Also when you come home from the hospital and just want someone to talk to email me.Best of luck to you. My sister had the mass at the head of the pancreas. She was diagnosed as a stage 2 due to the size of the tumor. We are 52 years old and live in Northwest, Indiana.
Stage strong and sounds like you will do very well. Awaiting to hear from you.
Bless you,
Pat

Thanks for the info Pat. I am glad your sis is doing well now. Does kind of give me an idea of some complications that can arise. The surgery is the big thing I have to get though first. I appreciate your candor and information. Continued good luck. Julie

Hi Patrn,
You are a good sister. I am very happy that your sister is doing well. I e-mailed you a msg. I did not see it in the msg. box, did you get it?
Anyways, I am very interested to find out more regarding the Vaccine therapy for the Pancreatic Cancer. Would you please give me the name, and tel# of the physician at the University of Chicago, who did this for your sister? Are you happy with the results? Do you know of any other Centers who may do the Vaccine Therapy? Any other info. in this regard is appreciated.
Good Luck to all in fighting with this disease!, and thanks in advance for your help.
Fari

I'm glad that my post here on 'Daily Strength' helps. I am a 1 year, 6 Mos, 10 days Survivor (from the date I was diagnosed). I wish you the best. It looks like you have a better jump on this. The brushing biopsy taken during the ERCP to place the stent was negative for me and I had to have an EUS for a second biopsy. Time is very important because this is a very quick and deadly disease. Make sure you feel good about your surgeon. My local (Albany,NY) surgeon was talking about bypassing this and that and I was like wtf I want this OUT. I searched and found one of the Best in Boston. a High volume PC surgeon is your best chance. GOD Bless you. and I wish there was something I could say to make you not scared. but I still have an issue with that myself. The best you can do is line everything up and have Faith.

Pat, Its wonderful to hear about your sister. You both are still in my prayers. I remember the trial you were talking about. I hope things go well.

Scottios. :)

My Husband also had the whipple on 29th April 2008 for ampullary cancer (T2 N1 M0)He now takes around 8 creon per day and is doing really well with no signs of reacurrance.

Wishing everyone well with a good outcome.
Take Care! Jeanx