Help - no quality of life

3 Posts | Page(s): 1 

Help - no quality of life

by Mich1031 on Thu Jul 17, 2008 12:00 AM

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I was just reading through different messages and thought maybe someone could help.  My husband was 47 last year when they did the whipple.  He was dx'd with ampullary cancer and it metastisized to 2 lymph nodes.  He went through five weeks of gemzar and taxol along with radiation at the same time.  His whipple was in August 2007 and we didn't start treatments until October of 2007 due to his incision being open and then contracting a staff infection.   I guess we are not one of the lucky ones, he has had one complication after another.  Between staff infections, pain in his stomach and vomiting frequently.  All tests come back good and as of January his pet scan showed no cancer.  The doctor suggested that he do 6 months of gemzar 3 weeks on and 1 week off at 10 times the dose of the first time.  This is the third time he has tried and each time he gets so ill that he ends up in the hospital.  

 We are so depressed and frustrated.  It feels like there has been no quality of life since the surgery.  I know he is scared and feels that he should try and do this so he is not sorry if it comes back.  But, what is the prognosis of ampullary cancer?  Is it the same as pancreatic cancer.  They constantly refer to his dx as pancreatic but the tumor was not in the pancreas.  Are they really the same outcome?    I am open to remarks and suggestions if anyone can help.  We've even gone back to the surgeon and he says we just have to treat the symptoms.  Not everyone has good outcomes.

Thanks for listening, 

Michele

RE: Help - no quality of life

by allimarge on Wed Aug 06, 2008 12:00 AM

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Ask for pancreatic enzymes.  Following my mother's whipple, she was tied to the bathroom.  Once she started taking the enzymes before EACH meal, her trips to the bathroom have become a lot less frequent and she isn't as unhappy.  Good luck! 

RE: Help - no quality of life

by kelliev on Sun Aug 10, 2008 12:00 AM

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My dad just had the Whipple for Ampullary cancer in June.  It did not spread.  His has struggled with some pain but it is getting better everyday.  His stamina is not great but it should improve.  He is being treated at Fox Chase Cancer Center in Philly.  His Dr. is one of the best so we trust him.  He states that this cancer is very rare and there is little research on whether chemo will be of help.  Yet his survival rate is 60% with just the surgery and may or may not improve to almost 70% with chemo.  My dad is leaning towards not doing the chemo due to side effects and the fact that it is a crap shoot.

He does take the enzymes.  He eats whatever he wants but does get gas.

Perhaps you should look into a cancer center.  Good luck.  

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