CancerCompass message board discussion started by TexasTeresa on 2/27/2008 http://www.cancercompass.com/message-board/message/all,21411,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My brother was told today that he must have the whipple procedure.  He has had chronic pancreatitis for many years.  They have found lezions and cysts in the head of his pancreas.  The doctor told them that they look suspicious.  Regardless if they are cancer or not, they told him that he MUST have the surgery within the next month.  The little that I have read about the surgery stresses the importance of having the right surgeon and surgery center for the procedure.  It reduces the mortality rate to less than 5% compared to 20% with someone that does not have the proper experience.  My brother lives in Oklahoma and was told that there was only one surgeon in the whole state that could do the surgery.  Where can I go to find a list of surgeons who do the whipple procedure on a regular basis and have the best success rate?  TexasTeresa Wed, 27 Feb 2008 00:00:00 GMT  On 2/27/2008 TexasTeresa wrote:My brother was told today that he must have the whipple procedure.  He has had chronic pancreatitis for many years.  They have found lezions and cysts in the head of his pancreas.  The doctor told them that they look suspicious.  Regardless if they are cancer or not, they told him that he MUST have the surgery within the next month.  The little that I have read about the surgery stresses the importance of having the right surgeon and surgery center for the procedure.  It reduces the mortality rate to less than 5% compared to 20% with someone that does not have the proper experience.  My brother lives in Oklahoma and was told that there was only one surgeon in the whole state that could do the surgery.  Where can I go to find a list of surgeons who do the whipple procedure on a regular basis and have the best success rate? My wife just had the surgery on 2/11/08 my oldest sons 20th B-day she is doing good but she is having problems eating without feeling sick. The doctor's say it's still really early give it time but you now how it is when your feeling like crap!!!! Just want to feel better. Anyway her doctor is here in Baltimore at Mercy Medical Center, he is the head of oncology there and is very good at his craft. He Helped her 8 years ago when she had a tumor in her right leg. Her surgery lasted about 61/2 to 7 hrs. they removed part of the stomach, part of the pancreas, part of her Duodenim and her gall bladder. If you want to get the best around and have the means to get to Baltimore the doctors name is Armando Sardi. Mercy's web address is www.mdmercy.com hope your brother does well where ever he has it done. JohnJ Wed, 27 Feb 2008 00:00:00 GMT If it were regarding my loved one and it was, I'd contact Johns Hopkins immediately.  They are essentially the Whipple Center of the US.  They do more Whipples than any other provider.  I'm certain that there are other good surgeons etc., but this is a very serious operation and Hopkins has a concentration of the most experienced Whipple surgeons.   ilikepurple Thu, 28 Feb 2008 00:00:00 GMT You might consider University of Maryland Medical Center.   Dr H Richard Alexander is there and was at National Institutes of Health for a long time before that.  He has performed many Whipple procedures and is well versed in pancreatic disease.   They have great and experienced medical and radiological doctors there as well should chemo or radiation be necessary.   Dr Alexander is not only a skilled surgeon.. he also has an indescribably great bedside manner which is equally as important to one's recovery.   Do yourself a favor and check this out.I can give a full vote of confidence to the care provided by Dr Alexander and the Univ of Md Med Center.Long time nurse and cancer survivor.Diana dcnbama Thu, 28 Feb 2008 00:00:00 GMT  On 2/28/2008 dcnbama wrote:You might consider University of Maryland Medical Center.   Dr H Richard Alexander is there and was at National Institutes of Health for a long time before that.  He has performed many Whipple procedures and is well versed in pancreatic disease.   They have great and experienced medical and radiological doctors there as well should chemo or radiation be necessary.   Dr Alexander is not only a skilled surgeon.. he also has an indescribably great bedside manner which is equally as important to one's recovery.   Do yourself a favor and check this out.I can give a full vote of confidence to the care provided by Dr Alexander and the Univ of Md Med Center.Long time nurse and cancer survivor.DianaMr father has bile duct cancer (lower bile duct) that was detected in August of 2007.  Had the Whipple Procedure done at Johns Hopkins with Dr. Cameron doing the surgery.  He has done followup radiation & chemo which he tolerated until the last week of therapy.  White count went dangerously low.  Appetite is non-existant -- he doesn't want to eat.  This situation is requiring a lengthy hospital stay.  Any recommendations on how to help him with eating? deaconson Thu, 28 Feb 2008 00:00:00 GMT I had my Whipple done at Columbia Presbyterian in NYC by Dr. Allendorf. I am 44 years old and I had it done 9 months ago. My only problems are eating and digestion which they hope will some day go away. I loved Dr. Allendorf he came highly recommend. any questions feel free to email me.Jill Updacountry Thu, 28 Feb 2008 00:00:00 GMT My wife had PC and found it difficult to eat also.  Had a G-J bypass and for some time was unable to eat.  We experimented. We found a local apple cider which had protein and vitemins added that worked as a supplement.  Puddings, fruit salad, soft fruit bars, even peanut butter cups, some of the relatively bland small microwavable soups worked, baby food, tomato soup, chicken noodle soup, gravy and mashed potatoes, some cereals, Ensure or Boost. Many will not understand this, but for the ill persons good, the caregiver must be unrelenting regarding encouraging the ill person to eat. To be honest this all brings back bad memories, but I sure hope some of these help.  It's just the most miserable experience to have to watch your loved one go through. ilikepurple Thu, 28 Feb 2008 00:00:00 GMT I know there is an excellent cancer treatment center at Anderson Medical Center in Texas. I'm sure they have experienced Whipple surgeons there. Also, go on Pancan's website and either search there for a surgeon in your area or call them for a recommendation. A good surgeon makes a difference. My husband had a Whipple at University of Pennsylvania by Jeffrey Drebbin (trained at Johns Hopkins). He had few complications and enjoyed an excellent quality of life for 10 months after that. But, first, check out Pancan. Your brother may prefer to be closer to home and they may be able to suggest someone. The Wife Thu, 28 Feb 2008 00:00:00 GMT My partner had the whipple done January 30th at Atriam Medical Center in Middletown, Ohio.  The doctor that did the surgery was Dr. Cobb out of Middletown, Ohio.  The surgery took about 7 hours and she came through it fine.  The one thing I can say is that so many people who have this problem the tumor's are wrapped around the arteries and the surgery can't be done, however her's was and he was able to cut it and repair it while he was in there. He is a vascular surgon and comes highly recommended.  She was in intensive care for 3 days and out of hospital in 6 days.  She does have some digestive problems and having difficulty with BM's but has healed very good from the surgery itself.  The staff at the medical center was astounded at how well she did after such a major surgery.  I wish you all the best. gibby1550 Thu, 28 Feb 2008 00:00:00 GMT My boyfriend, age 63,  had his Whipple surgery on 7 Sept at M DAnderson Cancer Center in Houston TX, part of the Univ. of Texas groupof hospitals.    They are the top rated cancer hospital in the U S fromU S News and World Reports Cancer treatment study.  Everything there isstate of the art,from the radiation equipment, right through havingCyberknife capability if it's needed.  They do lots and lots ofWhipples there, a reassuring fact with an operation this complicated. Hesaw Dr. Gauri Varadachary initially and his surgeon was Dr. Jeffrey E.Lee.  We couldn't have wanted better doctors, staff, or hospital forthis. Everyone we dealt with had a marvelous can-do attitude that neversounded like giving up.  He was diagnosed with adenocarcinoma onthe head of the pancreas in May 2007.   He had 5 weeks of chemo andradiation, then a little over a month to recover, then the Whipple. The recovery was difficult, almost 2 weeks in the hospital and 2 monthsof packing an open incision with retention sutures. He was a difficultand often uncooperative patient.  Had been incredibly healthy andrunning 5 miles a day, taking no meds at all , when diagnosed.   I hadsome advice early on from a friend's wife who is helping her husbanddeal with multiple cancers thought to be from Agent Orange exposureduring the Vietnam War. His wife told me to that my boyfriend wouldfeel lousy and wouldn't want to eat and that my "job" was to nag, push,pull, coerce, and do anything I had to do to get him to eat. I took herat her word.  Along the way, I yelled, cried, begged, threatened,walked out, came back and started again, but we got through it.   I cantell you it was hard on both of us, but he is doing well now, eatsnormally ...with digestive enzymes...and has minimal problems.  Enjoyshis beer again and has started to enjoy salads and tomatoes again. I made heavy use of unflavored high protein whey powder. I used it inscrambled eggs, made french toast, pancakes, and waffles with it addedto the batter, and protein shakes and smoothies, etc.  He refused todrink Ensure or Instant Breakfast (as I said, a difficult patient).  Itwas necessary to use the protein poweder because the things that werehigh protein were not things that he felt like eating, so I made themhigh in protein with the powder when I could. You can buy this at mosthealth food stores.   There are flavored varieties also, but I foundthe unflavored most useful. I found the following site very helpful infinding out how much nutrition/protein, fat, etc was in foods: http://www.calorieking.com.  You don't have to join to look up foodsand I used it all the time.  They even have the food content forrestaurants and fast food places, like Subway and McDonalds.  TheWhipple is a big incision and the body needs lots of protein to buildthe tissue to fill in that missing tissue and heal the incision.  Thenutritionist told us that our body prioritizes where it uses theprotein first and the first thing it uses it for is to keep your organsand brain and heart operating.  If it has protein left over it uses itto build the tissue to fill in the incision...so you need lots ofprotein to give it the extra it needs.  They wanted him to try for atleast 80 protein grams a day and I aimed for 100-120. Some days I madeit, some days I didn't.  I also recommend a food scale to weigh theportions...makes it much easier to assess how much protein you aregetting into them.  Good luck to you.  My thoughts are with you in this difficult time.Donna in FL   dmc1944 Thu, 28 Feb 2008 00:00:00 GMT  On 2/28/2008 ilikepurple wrote:My wife had PC and found it difficult to eat also.  Had a G-J bypass and for some time was unable to eat.  We experimented. We found a local apple cider which had protein and vitemins added that worked as a supplement.  Puddings, fruit salad, soft fruit bars, even peanut butter cups, some of the relatively bland small microwavable soups worked, baby food, tomato soup, chicken noodle soup, gravy and mashed potatoes, some cereals, Ensure or Boost. Many will not understand this, but for the ill persons good, the caregiver must be unrelenting regarding encouraging the ill person to eat. To be honest this all brings back bad memories, but I sure hope some of these help.  It's just the most miserable experience to have to watch your loved one go through.Dear Ilikepurple, I understand.  I will never forget the day my husband stood in the kitchen after asking me over and over what I wanted to eat, with no response from me.  Tears streaming, he looked at me and said "Do I have to watch you starve to death, because that is what's happening to you".  I had no appetite at first following Whipple surgery, but I can say that from that day forward, I ate everything put in front of me, even when I didn't want it and it was hard to swallow.  My husband is an excellent cook by the way, it was just hard to at first.  I honestly believe eating when I didn't feel like it kept me from losing too much weight as I slowly regained strength and my appetite returned.  If I didn't love him so much, and he had not been insistent, I would have done what people do when they aren't hungry - they don't eat.  So yes, I think it is important to encourage, or even pester the PC patient to eat.  Something.  Anything.God bless you.   AliveInOldeTown Thu, 28 Feb 2008 00:00:00 GMT  On 2/27/2008 TexasTeresa wrote:My brother was told today that he must have the whipple procedure.  He has had chronic pancreatitis for many years.  They have found lezions and cysts in the head of his pancreas.  The doctor told them that they look suspicious.  Regardless if they are cancer or not, they told him that he MUST have the surgery within the next month.  The little that I have read about the surgery stresses the importance of having the right surgeon and surgery center for the procedure.  It reduces the mortality rate to less than 5% compared to 20% with someone that does not have the proper experience.  My brother lives in Oklahoma and was told that there was only one surgeon in the whole state that could do the surgery.  Where can I go to find a list of surgeons who do the whipple procedure on a regular basis and have the best success rate? I live in Sherman Texas and had the Whipple procedure done in July of 07. A friend suggested the Cancer Treatment Center of America in Tulsa. They do this often and I was quite comfortable with the facility. My surgeon was Dr. Greiff (pronounced griff). They accept most insurance and the phone number is 918-286-5000. You can also look them up on the internet. I will be glad to answer any questions you or your brother may have, or at least as much as I can. God Bless You and good luck.  Ken kbear Thu, 28 Feb 2008 00:00:00 GMT I highly recommend Dr. Farnell @ the Mayo Clinic.  Ping-Pong Ball Fri, 29 Feb 2008 00:00:00 GMT Dr. Romano Delcore at the University of Kansas Medical Center in Kansas City, KS, does a large number of Whipples (I can't recall the exact number but I know he did 3 the week my husband had his. If you assume he does an average of 2 a week, that's104 a year, give or take. At any rate, he saved my husband's life. We were sent there by our GI Dr in Arkansas because of Dr Delcore's reputation in the field. I would go to Dr Delcore again in a heartbeat. You don't have to travel to one of the coasts to get the excellent care. TessG Fri, 29 Feb 2008 00:00:00 GMT i dont know if your willing to come to california. I had my whipple 3 weeks ago at UCSD with Dr. Michael Bouvet. He is really good. I really recommend him. Hope everything come out good. Lizzyblublu Fri, 07 Mar 2008 00:00:00 GMT