Pancreas Cancer Web


My mom was a healthy and vibrant woman. She began to have intermittent right upper quadrant pain in 1999, ultrasound showed gallstones. They did a cholecystectomy. Despite the cholecystectomy she continued to have pain, they did multiple ERCPs and found a stone in the common bile duct, the stone was removed endoscopically. She then continued to have pain and had several more ERCPs which showed a 2 stones in the hepatic ducts in the liver, they were able to remove only one, and decided to leave things alone. She continued to have pain.. had ANOTHER ERCP (like number 4 or 5 by now) which revealed a new stricture. We were told it's probably from all the episodes of pancreatitis from the many ERCPs. Her CA 19-9 was checked and was elevated and we were still told a less than 5% chance it was PC. She was sent to a Dr. Rosemurgy in Tampa, FL who had more experience with Whipples than the local surgeon for evaluation. He told her I don't 'think' you have PC, if you did I would operate on you today. He was going on vacation for a month and decided to operate on her when he returned with plans to perform a bypass. A month went by and it was horrible b/c she agonized over the possibilty this was cancer. I kept telling her it wasn't and I am a physician, mostly b/c I wanted to make her feel better and I just couldn't fathom that it could actually be a reality. How could this happen to MY MOM? I had just started my 2nd year of residency. At tthe time of surgery, biopsy revealed pancreatic mucinous adenocarinoma with no lymph node involvement. We were ecstatic and hoped for a cure but were warned b/c perineural and peripancreatic invasion were present. She was offered only 5-fu and radiation. We obtained a 2nd and 3rd opinion and I did alot of research and wanted to be sure she received Gemzar. So she did. She lost a total of about 50 lbs. She did well for about 9 months, but developed mets to the liver and lungs 18 months after whipple. It took us going to JH to figure out she had mets.. her local radiologists would never make a clear call on the CTs and her CA- 19-9 kept going up and down but overall trended up. She was advised to start Xeloda, but was unable to tolerate the GI side effects from it - she developed abdominal pain after just a couple of doses. She then went to a combination known as G-FLIP (Gemzar,5-fu,leukovorin,irinotecan,cisplatin). She had reduction of mets in her liver and finished 6 cycles, but it was extremely difficult to tolerate and she became very wasted and thin. It has been almost 4 months since her last chemo treatment and she is having more pain and not feeling too well. I forgot to add that she developed a Portal Vein thrombosis (clot) about 12 months after whipple, which has resulted in her platelets and white blood cell counts being very low because the splenic vein is also clotted and spleen enlarged. We are now told NO MORE Chemo. This has been extremely difficult for her and for all of us. We are still looking for alternatives and still fighting. She knows the reality of her illness, but wishes to fight, she says 'because I don't want to leave my girls'. I love her so much and can't understand why sometimes, but it has given me great comfort knowing and meeting other families and people with PC. I have left residency to spend quality time with her and have done some very important things during that time (like get married). I am praying everyday that God will give us JUST ONE MORE DAY. My love to all who have been affected by such a terrible disease, we are a family,we MUST fight, we MUST find a cure. I love you mom and when you are gone I will miss you terribly, there will always be something missing in my heart but I know you will be here in spirit and will be watching over us from Heaven and I will live with the faith that we will be together again and there will be no more pain.

Posted 10/29/2002 11:50 pm by Ilka
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