janettay
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HELLO ALL
MY CHARLIE IS ALMOST 2YRS POST WHIPPLE. SYMPTOMS BEGAN 3WKS PRIOR TO ERCP THAT SHOWED DISTAL DUCT TUMOR HIS RECOVERY FROM SURGERY WAS UNEVENTFUL WAS PLAYING GOLF 7MOS LATER WITH WEIGHT RETURNING PATH REPORT SHOWED CLEAR MARGINS WITH NO NODE INVOLVMENT OUR SURGEON SAID NO RADIATION OR CHEMO THAT A SURGICAL CURE WAS THE ONLY CURE TREATMENTS COULD CAUSE HIM TO BE SICKER THAN HE NEEDED TO BE WE WENT WITH THAT TRACKING THE CA19-9 WE STARTED TO HAVE INCREASE ONE YEAR POST OP WHEN CA19-9 WENT TO 2000 THE PET SCAN SHOWED A TUMOR IN THE SURGICAL BED CONNECTED TO THE PANCREAS WE HAVE SINCE HAD 33 RADIATION TREATMENTS AND 6WKS OF 5FU A PET SCAN LAST WEEK HAS SHOWN A DECREASE IN THE SIZE OF THE TUMOR EVEN WITH THAT WE STARTED A FOUR MONTH STINT WITH GEMZAR AND AT THAT POINT WE WILL DO ANOTHER PET SCAN AND GO FROM THERE I HAVE LEARNED THAT THIS DISEASE IS NEVER CURED ONLY MANAGED GOD HAS GIVEN ME THE GRACE OF EVERY DAY IS A GIFT…TELL THE ONES YOU LOVE HOW YOU FEEL AND WHEN I GO TO THE DOCTORS OFFICE AND LOOK AROUND I SEE HOW BLESSED WE ARE JANthank u lainey CPs recurrence is being treated as pancreatic although it presented in his bile duct the area was described as th e surgical bed post whipple he reacted to 5fu with facial rash that involved his throat making him unable to eat for 12 days so his dr discontinued that for now we see the dr tomorrow we will have PET SOON AFTER THANKSGIVING JAN
my husband cp is 18mos out from whipple doing great post surgery great recovery until 6mos ago when ca19-9 statred going up tumor in surgical bed showed in may now having rad and chemo still no physical symptoms from disease ca 19-9 this week is 3000 keep in mind post surgery it was 40 any advice on when to expect physical changes jan
marions…thank you i have learned so much by reading everyones comments for all to share a common ground in that cc lives in their worlds there are as many different stories of coping and living in spite of the difficult treatments and outcomes thanks to all for putting your lives and thoughts out there i fully understand that only one knows the future and he holds all of us in the palm of his hand jan
marions we are in memphis chemo will be gemzar and 5fu rad to surgical bed area external beam 19 treatments charlie is 65yrs old dr.s do not seem to be in a hurry do i assume this to be due to predicted outcome… im confused jan
my first message…my husband developed cc feb 07 whipple mar 07 clear margins now ca 19 9 is 3000 slated to start chemo and rad in 3 wks otherwise feeling and doing great golf every day its hard to see a otherwise health rustic man be faced with such a bad time ahead of him do we wait for other signs of disease progression or start treatments while he is on the upswing his post whipple health has been remarkable jan
