CancerCompass message board discussion started by Jcru24 on 1/22/2007 http://www.cancercompass.com/message-board/message/all,9012,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ IN Feb 2006 Drs. found a bile duct tumor;  later on March 9, 2006 it was removed thru a sucessful whipple surgery. In the O.R. they took 19 samples of my Pancreas all with negative results. After the surgery my oncologist started a series of chemos to eliminate any possible malignant cell not removed during the operation. I was feeling great eating well drinking wine 2/3 times a week one to 2 glasses and NO PROBLEMS.However, after October 15 I started having abdominal pains not a single spot but following the line of the Colon in other words the pain area can be situated in the liver area in the morning and the upper abdominal in the afternoon and moved to the lower abdominal at night. It comes like on prolonged cramps more acutes before and after bowel movement.A total of 6 doctors cannot find a diagnosis why it happens or where is coming from. So, they are giving me pain medication like Fentanyl, Hydroconone etc. Sometimes the pain is excrutiating like a 5 on scale of 0-5 others remain like 3 or 4.One thing we know for SURE it does not come from the area or related to the tumor removed.DOES ANYONE KNOWS ABOUT THIS  MYSTERIOUS PAIN and where is coming from? Or how I can aliviate the pain reducing the amount of drugs?I will really appreciate it !! Jcru24 Mon, 22 Jan 2007 00:00:00 GMT  On 1/22/2007 Jcru24 wrote:IN Feb 2006 Drs. found a bile duct tumor;  later on March 9, 2006 it was removed thru a sucessful whipple surgery. In the O.R. they took 19 samples of my Pancreas all with negative results. After the surgery my oncologist started a series of chemos to eliminate any possible malignant cell not removed during the operation. I was feeling great eating well drinking wine 2/3 times a week one to 2 glasses and NO PROBLEMS.However, after October 15 I started having abdominal pains not a single spot but following the line of the Colon in other words the pain area can be situated in the liver area in the morning and the upper abdominal in the afternoon and moved to the lower abdominal at night. It comes like on prolonged cramps more acutes before and after bowel movement.A total of 6 doctors cannot find a diagnosis why it happens or where is coming from. So, they are giving me pain medication like Fentanyl, Hydroconone etc. Sometimes the pain is excrutiating like a 5 on scale of 0-5 others remain like 3 or 4.One thing we know for SURE it does not come from the area or related to the tumor removed.DOES ANYONE KNOWS ABOUT THIS  MYSTERIOUS PAIN and where is coming from? Or how I can aliviate the pain reducing the amount of drugs?I will really appreciate it !!  Tgram00 Tue, 30 Jan 2007 00:00:00 GMT I too had the whipple in Nov 2005. For the first few months I had no issues with any pain. About 6 months after surgery I too started getting bad cramps, awful gas pains that move from place to place etc. I returned to the specialist who advised me that my pancreas had stopped producing enzymes so he put me on enzyme replacement pills. These have stopped the cramping and loose motions but I live daily with bad pain that starts in my upper back and moves to the lower back and eventually into my lower abdominal region, sometime leaving me doubled up on the sofa in agony. I have been on the enzymes for about 2 months.I think I have concluded that the pain I now get is just a result of the radical surgery and I have to live with it. The alternative doesn't bare thinking about. Hutchie Sun, 07 Oct 2007 00:00:00 GMT My husband 48yrs old is almost 2yrs post op whipple. He was doing great after surgery, chemo, radiation and was back to work. He was workign out and feeling great. Then all of a sudden he has pain in his right side, and tests all show nothing! No cancer, no nothing. All good! But he is in a lot of pain. Any ideas to help him, at this point doctors dont know what to do, and we are trying to figure it out. HELP please! -ladieluck ladieluck Wed, 10 Oct 2007 00:00:00 GMT I had Whipple Surgery in Sept 2005. Things have been going good. I feel fine but for the past 6 months, I have had abdominal pains on my right side. It kinda of feels like a runners cramp. It isn't really painful but it particularly bugs me at night. I have been popping the advil at night in order to sleep. My bowel movements change as well. They go from slightly constipated at night to loose stools. I am going for a ct/pet scan on April 8th. Just wondering what the outcome of your pains.  Did the doctors come with an answer as to your pains? craziness39 Thu, 27 Mar 2008 00:00:00 GMT  On 3/27/2008 craziness39 wrote:I had Whipple Surgery in Sept 2005. Things have been going good. I feel fine but for the past 6 months, I have had abdominal pains on my right side. It kinda of feels like a runners cramp. It isn't really painful but it particularly bugs me at night. I have been popping the advil at night in order to sleep. My bowel movements change as well. They go from slightly constipated at night to loose stools. I am going for a ct/pet scan on April 8th. Just wondering what the outcome of your pains.  Did the doctors come with an answer as to your pains? Hi, MY 44 year old brother had the whipple surgery in Jan. He is going through chemo now then will be followed with radiation.  He is getting what he calls crapmy pains.. The Dr. told him the cancer could not spread while he is on this mega dose of chemo but I wonder he was doing so good up until about 2 weeks ago. Other than losing 55 lbs since Dec. and being extremely tired he has come along way since his op. He had 7 out of 22 lymph nodes positive they put him at stage IV!! He has two small girls he is worried sick about if something should happen to him.  Did they ever find out a reason for your pains?  I know this is such a rare cancer it looks like the only place to find info is on this message board. I would appreciate you or anyone else responding to this ..Thank-you and my heart and prayers go out to all who suffer this dreaded Cancer and their familys. Thank-you ,PJ pjpjpj Mon, 19 May 2008 00:00:00 GMT Hi There. I have had a CT/Pet Scan done in April and had my results a couple of weeks ago. My cancer is back and has spread to my liver. I have to have chemo now and looking into a clinical trial. I have had to some research on some things because my doctors don't really know how to treat my cancer because it is so rare. I am getting copies of my records and will try to see what the mayo clinic can do for me.  I am thinking positive about all this because I am a fighter. I think your brother should demand a test to make sure that it isn't cancer coming back. Hope all is well. He shouldn't ignore pains.   craziness39 Wed, 21 May 2008 00:00:00 GMT I too had a Whipple November 2005. I had real bad pain @ 12 weeks, sometimes it would be so bad it would take me to my knees and flat on the ground. I had sevier dumping syndrome, sometime 12 times a day. Found out I had to take imodium & creon(pangestyme) enzymes. Your pancreas is not producing enough enzymes. My doudenum was removes during the whipple and this is where the bile mixes with the food leaving your stomach. In addition this is where you adsorb about 70% of the nutrients so the imodium & pangstyme help to slow down the process to break your food down. Stay away from sugars (eaiser said than done) stay away from fried & fatty foods. See your gastro intestinal doctor he/she should be able to help you. I still have some issues with gas & diarrhea & I am sure this is because of diet, but I maintain my weight & keep it reasonabily under control. I feel blessed at times as I did not get chemo. Still going to the doctor every 3-4 months for blood test ca-19-9 & my liver #'s they wer all over the place but in April they seemed to level out. I go to the doctor this week for check up. By the way some of the pain is nerve regineration & adhesions. God Bless. BrianP Mon, 04 Aug 2008 00:00:00 GMT