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Posts: 106
Joined: Nov 2004

Just wanted to update what is going on. I had my petscan done yesterday. Thank God that is over with. Actually the test is not bad I got to doze a little in the scan and the chair from all this stress. I met with my GI DR. also yesterday who is very baffled about my high numbers on the pancreatic enzymes. My lipase is now 703 (normal
range 11-82), amylase is 253 (normal range 29-103). My CA19.9 which is a tumor marker for the digestive system is now elevated at 84.8 (normal
range is <35). Now I am very scared. He said if I had a true pancreatitis I would be in alot more pain. He pressed on my abdomen where I had no pain. He said the MRI was negative and yet if I had pancreatitis it should have showed some inflammation? He said there is an MRI-CP where it is focused on the pancreatitic ducts. He first said he was going to wait for the results of the petscan and then do repeat bloodwork in 2 weeks to see if the levels come down. He then decided not to wait and do an upper-endo to get a look.
He will most likely scope down to the jujeneum which is part of the small intestine. The pancreatic duct empties into the duodenum which is the first part of the small intestine. He said at this point it could be anything a virus might have caused this, or benign lesions or possibly the medication that nobody knows anything about. But I have been off that medication EX-Jade since June 1 and my numbers keep rising. It can also be an ulcer. He did not mention the word cancer. That is still in the back of my mind. I know I am supposed to think postive. But these elevated numbers scare the hell out of me. I am booked to have the upper endo on this Thursday at the hopspital where I work. He will also scope the remaining part of my rectum. He said he might go into the illeostomy for the first time (YIPES).
He will not scope the mucous fistula which is the remaining part of the colon that has been disconnected as last year air leaked into the chest cavity from the opening of the fistula causing me to be admited into the hospital. I was literally filled with air up to my neck. I am very scared at this time. I will keep you all posted of that outcome. I am so worried of some sort of pancreatic cancer of the pancreatic ducts that the scans are not picking up. That CA19.9 elevated like that is scaring the hell out of me.
Your FRANTIC friend Fran from Long Island.

Posts: 206
Joined: May 2005

I understand what you must be going thru. I certainly hope they find out why your numbers are up. How long do you have to wait for your PET scan results? I know that is the worst part.. the waiting. You have been in my prayers.. and continue to be. Good luck to you, and please keep us posted. Remember one thing, I know its hard, but you are a survivor, and you have to keep that positive attitude. Mind over matter... it has worked for so many people. Remember you are strong, and you must continue to fight, no matter what. I am sending good vibes your way. Hope everyone on this board has a Happy Fourth of July!

Your friend in PA

jerseysue's picture
Posts: 626
Joined: Oct 2005

Frantic you'll be in my thoughts and prayers hoping for good results for you.

Kanort's picture
Posts: 1275
Joined: Jan 2004

Hi Fran,

Thank you for your update. Bless you. I can understand your fear. He did mention so many things that can be easily resolved, so I pray that we found out it is something simple to fix. Please know that we are all here for you and are keeping you in our hearts.



KathiM's picture
Posts: 8077
Joined: Aug 2005

Breathe. In and Out. Know that you are being hugged.
WOW! Do you know alot! Congrats on being informed...they WILL find out what's up...you will settle for NOTHING LESS!
Please keep us informed
Big, Huge, Gigantic good vibes.

goldfinch's picture
Posts: 737
Joined: Oct 2003

I am so sorry you have to be going through this. Sending positive vibes your way that whatever the problem is, it will be a simple fix.

shmurciakova's picture
Posts: 910
Joined: Dec 2002

Geez, I am sorry to hear of your anxiety. I know if I had those elevated test results I would be "frantic" too. The good news is they are going to get to the bottom of the problem soon and figure out what the heck is going on. All you can really do is wait and see! In the meantime maybe you can try going for a long run or walk, hike whatever. That always helps me and TRY to stay busy and distracted! Do you have any sleeping pills? If not I would recommend getting an Rx for them! or Ativan, or some such drug to calm your nerves.
I hope all your scans and such come back negative. Best of luck to you,

vinny3's picture
Posts: 933
Joined: Jun 2006

Hi Fran,

Just remember that the CA19.9 while called a tumor marker is not specific for cancer. There are some recent articles that describe elevation of the CA19.9 with such things as inflammation of the bile duct ( one woman with it > 1000). With the scope they will be able to see that area in pretty good detail. Of course the hard part is the waiting so keeping busy is still the best thing to do.

We are thinking POSITIVE for a NEGATIVE result on the scope and the PET scan.

Your friend in Mpls, Dick

Posts: 553
Joined: Mar 2006

Hi Fran,

I am praying that you will get through this time of anxiety. I know that the waiting is the hardest part. Also praying that everything turns out fine.


Betsydoglover's picture
Posts: 1256
Joined: Jul 2005

Fran -

I am sending good wishes for good news. I know the waiting is terrible and am thinking of you.

Take care,

jsabol's picture
Posts: 1156
Joined: Dec 2003

Hi Fran,
What a tough time this is for you! I can relate a bit....After my chemo and unrelated thryoidectomy, I had very high blood pressure and dangerously low potassium levels and abnormal kidney function values. I was so stressed, too, to have gotten through all this and to be facing such a cluster of symptoms. The nephrology consult felt it was "probably an adrenal tumor (about a 95% chance!), hopefully benign", which just about flipped me out. My thin slice adrenal CT revealed GOOD NEWS: it was an unexplained adrenal malfunction, with no tumor. An old fashioned blood pressure med was all it took to treat it, and all the sx's soon resolved.
So, hang in there, keep working with your docs to push for an answer and try not to panic. You are in my prayers.
Wishing you a good outcome, Judy

Posts: 297
Joined: Apr 2004

My thoughts and prayers are with you, Fran!

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