CancerCompass message board discussion started by stephen22 on 4/29/2008 http://www.cancercompass.com/message-board/message/all,23556,0.htm Fri, 04 Jul 2008 00:00:00 GMT Fri, 04 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I underwent a full Whipple procedure on February 25th. My initial recovery went smoothly and I was released after 6 days in the hospital. However, 3 days later I began to vomit profusely and was readmitted, suffering from delayed gastric emptying. I spent 4 weeks additional waiting for my stomach and intestines to work together again. Finally, after a baloon dialation, things started to work. I have been home for 2 weeks and began a part time schedule at work this week. I work in downtown Chicago and commute by train from the suburbs.I am now looking for an every-day oncologist--all I had was a surgical oncologist--and have seen one doctor. I have a second opinion next week.My tumor was cancer but all my lymph nodes are clean. There appears to be no spread.Does anyone know what the normal treatment is for post Whipple surgery--for pancreatic cancer? Is it a combination of radiation and chemo, chemo only, or ? The first doctor recommended 6 months of Gemzar chemo with no radiation. He said there is little to prove that radiation makes a difference. I have no idea what to believe and need advice in which doctor to go with, once I see the second. Any information, stories, or advice would be greatly approeciated.Thanks stephen22 Tue, 29 Apr 2008 00:00:00 GMT Hi Stephen, Very glad to hear you are one of the very few lucky ones able to have the Whipple; sorry to hear your recovery was so long.  Most folks who have the Whipple have both chemo & radiation.  Suggest you visit the Johns Hopkins support board; it is much more active than this board.  There are many survivors and care givers who have lots of experience and will be pleased to help you by answering all your questions and offering opinions and advice if that is what you want.  They are mostly kind and very knowledgeable.  Most of them advise aggressive chemo since PC is a very aggressive  cancer and takes no prisoners. Do you mind saying who your surgeon was and which hospital ypu were in?  There is a group that meets in Northlake, think it's the first Thursday of every month; hear it's a very good meeting, run by a survivor.  Just ask, someone on the Johns Hopkins board will probably have the details. Best wishes for continued success, Joan  Joan l Tue, 29 Apr 2008 00:00:00 GMT My surgeon was Dr. Mark Talamonti at Evanston Northwestern Healthcare. I was very happy with him--he's very direct, tells you like it is, but will answer all questions patiently. I feel fortunate to have gotten him as he's highly regarded around here and the nation for work with pancreatic cancer.They found my cancer by accident and I was fortunate to have gotten worked up the chain quickly to good doctors. Everything happened so fast. I thought I got food poisoning on a trip to Denver and was sick for weeks after. Superbowl Sunday I felt great and went to a place for ribs--enough to bring some home for the game. I felt fine going to bed but at 2 a.m. I had a severe pacreatitis attack. I thought it was bad gas or the food poisoning acting up again. After two more attacks that night I finally went to an emergency room. All my urine was coke colored and the x-ray of my abdomen looked peculiar to the doctor. So they did an ultrasound thinking I had a gall bladder problem.In doing that they saw something and ordered a CT scan. It was then that they told me I had a mass on the head of my pancreas. I spent two days in the hospital letting my insides calm down. Then I was sent to a Dr. Alassadi at Northwest Community Hospital in Arlington Heights. He did an ECRP with fine needle aspiration biopsy and confirmed it was cancer on the pancreas. He referred me to Dr. Talamonti. I had my Whipple February 25th.It turned out to be a rough ride given the delayed gastric emptying complication but overall I am healing well. I get real sore by evenings but am eating well, with enzymes, and am getting back to work, etc. I have to make myself slow down and pace myself--the Whipple is no easy thing to recover from. But I do think having it done by a surgeon who does a lot of them has been huge in how fast my body is recovering.The only thing I didn't get much of was advice on next steps. He's strictly a surgical oncologist. His job is to get you to the next treatment phase. I will check out the other message boards--thanks. As for chemo and radiation one doctor I saw recommended against radiation because the tumor was removed. I have a second opinion coming up next week at Northwestern Memorial. So I am looking for anything to help me understand and make a decision.Thanks,Stephen    stephen22 Wed, 30 Apr 2008 00:00:00 GMT Hi again Stephen, My husband had his Whipple with Dr. Talamonti 12/06 when he was still at Northwestern Mem in Chicago.  I agree he is excellent.  Are you aware his father died of PC?  My husband required a portal vein patch taken from his jugular vein so another surgeon was called in for that part of the surgery.  He had negative nodes and no mets at surgery and none so far.  However, he does have lung mets from 9/01 colon cancer; we were all surprised when the lung mets turned up 3/08.  We thought the colon cancer was a thing of the past.  He has 3 lung lesions, bilateral, not operable.  His oncologist prefers not to do chemo at this time but will wait until he has symptoms; his quality of life at this time is pretty good.  He goes out every day with his buddies, bowling or golfing or just for lunch.  By the way, my husband will be 77 years old in August.  He is somewhat older than I am, so I am still working.Keep up with your enzymes, take it slow and get a lot of rest.  Also visit the Johns Hopkins support board; it's much easier when you know you're not in this fight alone and those folks really have very good info.Best wishes for continued recovery.Joan       Joan l Wed, 30 Apr 2008 00:00:00 GMT You need to get at least two appointments with oncologists who specialize in PC. I assume you live near Chicago so there should be someone there. You can go to Pancan to get recommendation or advice as well. You may also want to inquire about clinical trials. You are lucky to have no lymph node involvement but PC is a nasty, aggressive disease and needs to be treated aggressively so get a good doctor or two and get some more opinions. The best of luck to you. The Wife Thu, 01 May 2008 00:00:00 GMT Thanks for referring me to the other board. It is more active.Did Dr. Talamonti advise you at all on post whipple treatments?By the way, I am 49 and healthy--or was till I found out about the PC. I am not a smoker nor drink much. I am convinced it's a genetic thing as there is a lot of cancer in my family. My sister had stage 4 colon cancer at 49--she is a year older than me. She survived so I am hoping I react well to the treatments too.How have you coped with it--to stay positive. I m really struggling...Thanks  stephen22 Thu, 01 May 2008 00:00:00 GMT Hey Stephen, I saw your note on the other board about Dr. Mulcahy; my husband saw her for a second opinion, at my insistence.  She advised the same treatment plan that the the oncologist Ray decided on advised.  He had radiation while also having Gemzar and 5 FU.  The infusions were every 3 weeks for 3 weeks then 1 week off; this went on for 6 months.  He missed 1 or 2 infusions due to low platelets and received a shot of a drug (the name of which escapes me) every week to build up his red blood cells. ( Dr. Talamonti did want Ray to be a part of a vaccine program he was going to implement at Northwestern but by the tine Ray's chemo was finished Dr. Talamonti had moved to Evanston Hospital and we never heard any more about the vaccine trial.)  However, he had a 2.5 cm adenocarcinoma of the head of the pancreas and I'm not certain if neuroendocrine treatment is the same.  He tolerated the treatment pretty well, never had nausea or vomiting but was tired.  His appetite was off and  I had to coax him to eat; there is a drug derivative from cannabis called Marinol, perfectly legal, that is said to boost the appetite and work well.  I didn't know about it then or would have had Ray take it.  Ray is depressed at times, a well-known side effect of pc; most patients and many care takers use an anti-depressant to get through the days and nights.  Ray will never admit he is depressed hence no anti-depressant but overall he deals with things pretty well.  There is a lot of support on these boards, some folks look to their religion, others to their families and friends for help and support.  I guess we all just do what we can to make it, a day at a time. I didn't mean to go on at such length.  If you have any questions, don't hesitate to ask.  I will be glad to help in any way I can.  I know this is a very hard road. Best wishes for continued recovery.Joan  Joan l Thu, 01 May 2008 00:00:00 GMT  On 4/29/2008 stephen22 wrote:I underwent a full Whipple procedure on February 25th. My initial recovery went smoothly and I was released after 6 days in the hospital. However, 3 days later I began to vomit profusely and was readmitted, suffering from delayed gastric emptying. I spent 4 weeks additional waiting for my stomach and intestines to work together again. Finally, after a baloon dialation, things started to work. I have been home for 2 weeks and began a part time schedule at work this week. I work in downtown Chicago and commute by train from the suburbs.I am now looking for an every-day oncologist--all I had was a surgical oncologist--and have seen one doctor. I have a second opinion next week.My tumor was cancer but all my lymph nodes are clean. There appears to be no spread.Does anyone know what the normal treatment is for post Whipple surgery--for pancreatic cancer? Is it a combination of radiation and chemo, chemo only, or ? The first doctor recommended 6 months of Gemzar chemo with no radiation. He said there is little to prove that radiation makes a difference. I have no idea what to believe and need advice in which doctor to go with, once I see the second. Any information, stories, or advice would be greatly approeciated.ThanksHi and welcome to the world of survivors.I had a Whipple done Auugust 2006. Had a tumor on the head, they got that, nothing they saw in the nodes. Took 1/2 my stomach, 1/2 my intestines, gall bladder too. Also restructered ducts to the liver and kidney. Was in the hospital for 3 weeks, got out on my 60th birthday.I did 6 weeks of radiation and started chemo in October 2006 (still on it). I get GEMZAR and 5FU every week for 3 weeks, then 1 week of vitamins, then back to chemo. They found some VERY SMALL spots on my lung and have since put me on oral chemo (Xeloda) also. They don't know what the spots are, but being proactive I guess.No complaints, still here, that's all that counts.....Good luck and God bless. mrtippy Sat, 03 May 2008 00:00:00 GMT I had a whipple 12/06.  I had the nueroendocrine type.  I asked my oncol.; why everyone else gets chemo and I don't. He said this type of pc chemo won't touch the tumor or help.  but I guess if you have aden.... the fast growing pc they give you chemo.  So it all depends are what you had done and what type of pc you had.  Best of wishes to recovery, Dawnella Dawnella Sat, 03 May 2008 00:00:00 GMT