Looking For Whipple Survivors

My mom is only 65 and was diagnosed w/bile duct cancer about a week & ½ ago, after she became jaundiced. She has always been very healthy up to this. Currently, she’s in hospital recuperating from a Whipple procedure, performed last Wednesday. So far, she’s doing great & today she may have some of the tubes removed and be able to start drinking liquids and be moved out of ICU, if her x-ray looks good. I wanted to find others who’ve been through this process. What has your recovery been like? What are some things that our family can expect or help her with? She still has part of her pancreas and part of her stomach, so we are hoping her diet will not be significantly altered. Also, the doctor has been optimistic that the lymph nodes were not affected, although pathology will tell for sure. Would anyone share their stories with me & my family so we can help our mom? Many thanks & wishing you all healthy blessings! -Janice

My husband had the Whipple operation performed on January 3rd to remove two cysts (IPMNs) that were benign, but if left there could have turned into a malignancy - 50/50 chance that that would happen. These cysts were also becoming an obstruction, blocking the pancreatic enzymes, creating a backflow, and causing the portion of the pancreas with the impaired circulation to shrivel, if this was not corrected. Total hospital stay was eleven days (he was discharged on 1/14). He is not on any pain meds. (once he was taken off the morphine drip in the hospital that was it), walking unassisted, eating smaller portions, but still his three meals a day. He finds it hard to eat so often, so he would rather have the three. The only restrictions at home (we see the surgeon tomorrow for followup) are no driving and no heavy lifting. Please tell your mom to use the spirometer (breathing exercises), to prevent pneumonia/congestion. It is not easy, but very important! My husband lost sixty percent of his pancreas, the duodenum, a portion of the lower stomach, the gallbladder and the bile duct was resectioned. The frozen section, as well as final path report were benign, but the surgeon felt that this was the case from the beginning. I wish your mom the speediest of recoveries and take it a day at a time. Good luck to all of you. Jackie

My mom had the whipple sept.8, 2005, ICU only 24 hours, hospital stay of 10 days. She had the morphine drip, but it played funny games on her mind, so had to be removed. She did quite well in the hospital, and did well afterwards until about november, when she started her chemo & radiation treatments. They have just about done her in. Had a PEG tube inserted in December, she was going in to have her esophogus looked at & stretched, as she had a small narrowing there, and it was decided that the PEG tube be put in at the same time, as she was not able to keep anything down, eating was null, drinking was null, kept getting dehydrated. She has lost a total of 74lbs since diagnosed last spring/early summer. She had the head of the pancreas, the duedom, gall bladder removed, 12 lymph nodes, which of 1 was diseased. She just spent a week in the hospital to try and get her squared around, and some calories in her. She is still on the feeding tube at home now, 24 hours a day, can be removed if she goes out, which she doesn't. It's been a very rough road for mom, and right now, we all feel it's more mind over matter to get herself going. I've been told this a long, long, recovery, and I keep telling her that. Giving her encouragement. I give her "2" week goals, baby steps. The first "2" week goal was that she would be able to start eating just small bites of things, and she has, and now her second "2" week goal is by this friday, she will not need her "bowl" {for nausea & vomiting} as a crutch, and it's been almost a week now since she has had any vomiting. I've got to come up with another "2" week goal, and I think it will be her being able to walk the hallway of where they live more. She is very weak, and we as well as the home care nurse tell her that if she doesn't get some exercise with the muscles that she hasn't used for months, she won't get stronger. She walked twice yesterday, which I'm so excited about. Janice, just be strong, as hard as it may be. Your Mom will need every ounce of support you have, as well as your friends & family. It's a tough road, but as I keep telling my mom, she has so much to look forward to, my youngest will graduate from college in April, and will probably be engaged to be married soon. And I tell her, and I know this may sound mean to some folks, but mom & I have such a unique relationship, as many mom's & daughters have, but I told her, hey lady, you're the mom, you're supposed to be taking care of me, your kid. It made her smile. My prayers & thoughts are with you & your mom & your family, please stay in touch, you're gonna have your weepy moments, I did, or as I called them, my melt downs. But you know, I cried like a baby after the surgeon came out and told us she was ok. She was in surgery 9 hours, and I was just so relieved that she was in there that long, because we had been told that if anything else looked suspicous, he wouldn't put her thru this type of surgery. And this is MOm's second round of cancer, 41/2 years ago she had stage IV melanoma in her foot, and had that plus 32 lymph nodes removed. Once again, my thoughts & prayers are with you. Lynne

Thank you both for sharing - it helps to know other families are going through similar experiences. I hope your families continue to heal strong! My mom was moved out of ICU yesterday & the docs remain optimistic about her progress. So far she's only had a couple of bad moments, but overall she's been great. They should be starting her on liquids soon and I'm a little apprehensive about that, but hoping for the best. Thanks again for your stories, it's really comforting to know we're not alone in this. :-)

Hi Janpan, My name is Rose. I am an RN and I had a Whipple done becasue of an adenocarcinoma of the duodenum in 1999. I am doing fine. The first year was tough because I didn't know I had celiac disease....which probably caused my cancer. I had gotten down to 93 pounds and was very ill the first year. Once I got on a gluten free diet, I gained 45 pounds and haven't looked back yet. May I suggest your family member be tested for celiac disease...a very common autoimmune disease that leads to malabsorption which depletes your immune system. Good luck ! Rose

Hi there, my dad had a whipple procedure about 5 years ago and he is doing pretty good. My girlfriends thinks he looks very healthy at the age of around 77. I noticed he started loosing muscle mass about a year ago and it turns out that he needed an enzyme called PANCREASE to help with the digestion of his food. After taking this, he began to put some weight back on and felt alot better. I know alot about the operation as I have read alot about it and experienced it. Any questions you can write me

Hi Janice, My father also became jaundiced and was diagnosed with pancreatic cancer. He had the Whipple surgery last September. It was successful and he recovered very well. He was very tired for a considerable amount of time but slowly began to feel like himself again. He went for his 5 month CT scan and it showed lesions in his liver that progressed from the pancreas. At the time of the Whipple, they were undectable because it was explained to us that the "seeds" from the original tumor can't be seen until they grow into lesions. Now he's on chemo and Tarceva to shrink the tumors and stop the growth of the cancer cells. We weren't prepared for the cancer showing up in his liver, but we're optimistic. It's great having a support group like this. Any questions, don't hesitate to ask. Julia

Hi Rose, What wonderful news It is great to hear survivor stories like yours My husband also had a whipple for adenocarcinoma of the duodenum in 2004. Th emargins were clear but he had 4 lymph nodes out of 16 involved so he had to have chemo for 6 months all his tests since then have been clear. Did you have to have any chemo ? We were wondering how you found out that you had cealiac disease. I wouold like him to have the test for the doctors have not said anything about it for they saiod that he would have been having diarea etc by his age 35 years now if he had cealiac disease. Since the whipple (Nov 04) he has had low iron stores I was wondering whether you have had a similar problem we have been told that the duodenum and base of stomach is where iron is usually absorbed Hope to hear from you soon Regards Belinda

Hi Belinda, I'm so glad you respnded to my message (something I've never done till this week, but I just felt drawn to check out the site). First, your husband SHOULD be tested for celiac disease. Only 33% of celiacs have gi symptoms...though the medical community thinks they all have to be severly malnorished. I run a support goup and see many new members in their 80's with no symptoms except anemia and osteoporosis. Go to celiac.com and read up on it. Anemia, like your husband with depleted iron stores is directly related to the malabsorption of nutrients from the flattened villi in the small intestines that respnd to gluten found in wheat, oats, barley and rye. I can also mail you information from the U of Chicago....please let me know how I can hlep. Rose

Hi Rose, Thankyou fro responding. I am sorry to ask so many questions but as we are sure you know Duodenal Cancer is very rare. It is so wonderful to hear a story like yours. What test did the doctors gove you to determine that you had celiac diseas? Was it the blood test or a biopsy? Did you have chemotherapy after your whipple? What stage was the tumour? We are trying to organise a blood test this week so that we can test for it but I have been told that this blood test is not very reliable. Hope to hear from you soon. We are from Sydney Australia Take Care, Belinda