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I have been diagnosed with renal cell cancer of the pancreas. Treatment will require total removal of pancreas, gall bladder and spleen. This will render me diabetic. Has anyone out there had this done and could you please tell me what your experience has been of the operation but also of quality of life afterwards......Any input on any of the above would be gratefully recieved. Thank you.

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Hi loulou: I'm fearful I might have the same fate only different C
What is renal cell C in the pancrea??

I have to say I woul;d love to keep in touch.
I hope I will be eligible for the op your having, I know that might sound crazy but what is the alternative??

What state do you live in and what happened?/

I mean how did the symptoms start and what tests did thy do
to give you this diagnosis??
Sincerely,
Denise

My email is

you have to put in the at sign @ in the middle of 430 and hotmail
I dont know if they allow you to post your email so I did it this way!!

Please write.......

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Hi
I had my pancreas, spleen & gallbladder out as well (also part of my bile duct & small intestine.) I am 2 1/2 yrs out of the surgery. I am Type 1 diabetic and that isn't easy but its become much easier since the pump/ I take great care of myself, have 2 young boys, exercise everyday, very active in all my kids activities and have full, good life. It takes determination and a VERY positive attitude. Choose to live and surround yourself with uplifting people. We all have crosses to bear and we choose how we carry them through life. Feel free to contact me anytime for support. It really helps
Good luck!!
Eileen
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Hi
My friend is going to have her pancreas remove (total pancreatectomy), from your experience what should be prepared for the recovery period at home?

Do you think we should get her professional help or can we nurse her ourselves?

How long is the recovery?
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Hello! : ) I have had all three organs removed. In Jan 2007 I had my gallbladder out. My problem was I kept getting pancreatitis. I have had it since i was in 6th grade. The attacks stopped for awhile and then when I started my nursing career is when the attacks started again. So in Dec. 06 my family dr. suggested that if i got a recurrent attack then we would consult a surgeon and he would take it out. Well, two weeks later I had another attack and my gallbladder came out. I went 4 months without another attack and then it happened. So the surgeon told me that I would have to have part of my pancreas out after looking at an MRI. The pancreatic fluids weren't flowing correctly through the pancreas. So that surgery was trying and i was in the ICU for a few days, but my spleen and part of my pancreas (the tail) were out. The gallbladder surgery was okay, but I had some dumping syndrome, which after I ate i had to go to the bathroom. I made it a year and then another attack of pancreatitis... went home... two weeks later... another attack of pancreatitis... so my remaining pancreas had to come out.
I have been out of the hospital since august 13th.. the recovery has been okay. I had to go back in the hospital because I had a pseudoaneurysm near my liver... a staple or a suture had rubbed a hole in the artery and I was throwing up blood and had to have multiple tests and a stent to fix it. That was two weeks after surgery and i'm fine now. I am a type one diabetic with no pump... my 90 day wait isn't up yet. I can't wait to get it though. I hate the jumps in blood sugar sometimes 90 and then it can be 300. I will go back to work full time soon. I have to take enzymes to digest my food before meals. But everything is fine.

As for the recovery period at home. If i was tired i slept. But you must make them get up and move.... they could get weaker if not. the pain will be the worst part. The sutures on the inside pull so make use of the pain medicine they provide. When the staples on the outside come out it will feel so much better. The stomach where they cut will be numb for a long time. About the insulin... remember to rotate sites to the legs, arms, and stomach. But recovery should be okay. If you need anymore help you can e-mail me

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Hi louloulapeouse and Eileen, so how are you doing? My friend also has pancreatic cancer and just had his pancreas, spleen, and gall bladder removed last night; which wasn't expected. I'm going crazy trying to wonder what he is going to be facing!? Any insight would be very helpful!
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Hello. I have had 7 family members die from pancreatic cancer and after developing pancreatitis they discovered a pre-malignant cyst in my pancreas. In Sept. 2007, after a year of living exclusively on a pic line with TPN, they removed my pancreas, spleen, duodenum, 1/2 of my stomach and part of my small intestine. My gallbladder, appendix and uterus had been previously removed. Now, over a year and 7 months have passed, life is good. I use an insulin pump and that makes taking insulin much easier. I have some gastrophoresis, but I do pretty good at keeping it in check with med's. I take lots of supplements and enzymes and I appreciate every day that I'm given. Yes, surgery wasn't a piece of cake, but it is really worth it. I've been hospitalized a couple of times for back surgery and once for e-coli in the blood due to the ease of bacteria to come back into our system, but each time I have come out of the situation with fling colors. Surgery & stress can make your blood sugar go a little out of whack, but discipline and a positive attitude seem to get things back in line. Make sure you have plenty of loved ones to support you through your endeavor and make sure you let them know how much you appreciate them. Look into the possibility of islet cell transplantation and make your own mind up to see if it's what you want. It didn't work out that islet cell transplant was something we wanted, but some people are very happy with its' outcome. Keep laughing and know that by being positive, more people will want to be around you. It isn't an easy road, but anything good in life is worth working for. Best wishes for a favorable outcome.
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Good Afternoon, I have been searching for a "support" group regarding pancreas removal. I'd like to find others that have gone thru the surgery. A little about me: I had the surgery to remove my pancreas and spleen on May 28, 2009 at Baylor Medical Center in Dallas. I had no problems with diabetes. I had an islet cell transplant, therefore, I am now a diabetic, but in hopes that it is temporary.

My question is: For anyone having their pancreas removed, how long did you have issues with pain? I had chronic pancreatitis for 2 yrs, then the decision was made to remove it. It's been 2 months today since my surgery and I have had extreme pain since. I thought that I was on the road to recovery but the pain is gradually getting worse. I'm told by my doctors that it will last for awhile longer. Any thoughts from anyone ? I would really welcome your response. Thank you.
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I have been very sick for 20 years, and last year I had a cyst removed on my pancreas, complications ensued and I fought for my life for six months in the hospital. The doctors threatened to remove my pancreas if the infections did not stop. I did not drink nor smoke. The cyst was non cancerous and was in the head of the pancreas. I also have Porta Vein Thrombosis and many other problems. Talking with others that have similar health issues helps me. It helps me understand what the issues arew and how to deal with them. I am a 53 year old male. I have been on disability for 15 years, and was too sick to work way before I got disability.

I know this thread is old, but it looks ok to keep it going. Pancreas info forums are less plentiful than most other health problems.

I do know a guy who had cancer of the pancreas and they removed part of it and part of the stomach. He still does not feel well 2 years later. I don't feel well one year later and am on lots of meds and pain killer. It appears that some people have an easier time than others. There is no pattern. I am totally shocked I lived and the guy who had cancer is stil in total shock.

I can no longer gain weight no matter how much I tried. My weight went from 190 to 120 lbs and am back to 150 lbs. I was on a feeding tube for 6 months, lost the ability to walk, and gained all that back with a hard tough fight. Some people just do better than others.

I wish you well.
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I am having my pancreas removed and islet cell transplant done @ Baylor in Dallas, I am a nerveous wreck./ it will be done Sept 25th 2009
I am interested in how you set your mind to it also what kind of things to expect after I get Home, when do they take out the stiches?
I want to talkmore about this with per that had his in BaYLOR dALLAS, wHO WAS YOUR dr OR dr'S
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I just had 75 percent of my pan removed along with all of my spleen Sept 2009. This has been the hardest thing. They say they have gotten all the cancer but when does the pain quit. I am not able to take care of myself. Will I ever be back to normal and not have to worry about the cancer?
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I can relate to what a lot of what has been posted. In September 2009, I had surgery to remove the tail and body of my pancreas, along with my spleen. It has not been an easy road, but it is getting better. I still have discomfort at the incision site when I sit for a prolonged period of time and when I cough or sneeze. I also have bulky diarrhea and then other times, I am totally constipated. I recently had a CT scan and labs done, which were okay. I was told it will take some time to totally feel "normal." I have lost close to 30 pounds and I still have a time digesting foods (of course all my favorite comfort foods!!!). I get very frustrated , but I try my best to stay positive, keep moving, and keep praying. I also have to realize that the body has to adjust to being cut open, organs removed, and functions getting back to normalcy. It takes time and we just have to be patient and allow our bodies to heal. Good luck to you all.
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Hi all, my uncle had his pancreas removed about 2 years ago - very large benign tumor. He still has some trouble regulating his glucose - he finds that the insulin in his pump begins to lose effectiveness on the 3rd day, and he gets up at 3AM to check himself, as he's had some scary lows. One bad episode, his glucometer told him he was high, so he kept giving himself insulin, and the finally called the ambulance - who found he was in the 30's - his glucometer had gone bad...

But he likes the convenience of the pump - the first year he was doing injections.

Is anyone using the glucose monitor that works with the pump to tell you if you're level is rising or falling? He can't decide if it would be more trouble than it's worth.

He also has continuing digestive problems - does anyone have enzymes that work well for you? How many do you take with a meal?

tx,
kathy
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I have lived 39 years without a spleen which was ruptured during a car accident and had to be removed. When I get a cold or the flu it lasts sometimes up to six weeks. I can't seem to fight it off and most times develop infection in my throat or sinuses. I have had the pneumovac as well which will keep me clear of pneumonia. Does anyone know how I can boost up my immune system? I take vitamin C and Cold FX everyday and also astragalas. I am on my second cold of this season and am getting frustrated. I have lost one of my closest friends because of my illnesses - I had to cancel a trip with her one year when I was sick for six weeks with a very bad sinus infection and the flu and she had to go by herself. She has never forgiven me and can't understand how sick I was. The rest of my family is getting frustrated with me as well because I always seem to get sick when I do too much or take on too much. I can't plan a vacation away. Thanks for listening.
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Hi,

I had my spleen, half panc and gb out 2 years ago. I do get sick like you but chiropractic has helped me a lot. also, staying away from sugars and white flour helps.

I was wondering.. I get so many strange pains that I never had before.... your mind always goes to the worst things first. How do you ever live normally again. I am so greatful I survived... no cancer... a large cyst was my problem. But I am so scared of something worse from complications. How do you shake the feelings.

Laura
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