CancerCompass message board discussion started by Notsick on 11/23/2005 http://www.cancercompass.com/message-board/message/all,3563,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am interested in hearing from anyone who has had the whipple procedure and the results of the procedure. Notsick Wed, 23 Nov 2005 00:00:00 GMT If you are eligable for the Whipple, then your PC is localized, which is great news. The Whipple is the only cure for PC. It is a tough surgery with a long recovery time, but its your only hope. Make sure that the hospital where you have it done, does Whipple's on a regular basis, at least 5-10 a year. They have much better outcomes than those who do less. God bless. Oncrx Wed, 23 Nov 2005 00:00:00 GMT Hi, Yes I had the Whipple procedure in September 2004. I was diagnosed with pancreas cancer in April 2004 and did chemo prior to the surgery to reduce the tumor. I had the surgery done by Dr. Joe Levi at the University of Miami Florida, the Hospital is Jackson Memorial. He does over 70 of these procedures a year and I also would recommend that you get someone that does a lot of these procedures. It is not an easy surgery so you want to have someone that has lots of experience with this procedure. Please let me know if you have any more questions about the surgery. Thanks, Barry Blg2789 Sun, 27 Nov 2005 00:00:00 GMT My Dad had a Whipple and survived for 5 years before he got cancer again (bone). It gave him all those years and seemed to be well worth it. He did have a few problems after surgery. Stomach pain trouble eating and keeping food down etc... His doctor was Dr. Drehben from Barnes Jewish Hospital in St. Louis Missouri. He would of died within 2 months if he did not have the surgery so it was worth it. Rob R. Mon, 28 Nov 2005 00:00:00 GMT My husband was diagnosed in May 2005 with pancreatic cancer. The whipple was attempted in July 2005 but they had to stop the surgery because the cancer had gone to a lymph node. He had 4 treatments w/gemzar in Aug 2005 and Sept 2005. Oct 2005 was a 'free' month with no chemo -just 2 shots of heparin daily to try to shrink or dissolve the blood clot. Blood clot only got bigger. We tried to go on Tarseva last month but Medicare hadn't approved it & it's real expensive, so he took 3 weeks of Xelada. He's losing lots more weight now and getting weaker. They originally gave him 2 - 6 months - I'm afraid his time is almost up. He's lost 85 - 90 pounds altogether. If you're in or around Texas, the best man for a whipple procedure in Dr. Katz at Presbyterian Hospital in Dallas. He's amazing. Good luck to you and yours - this is the toughest thing we've been through in our lives. Tambar Thu, 01 Dec 2005 00:00:00 GMT My husband has a benign cyst that has been under observation for the past year. Local radiologists gave conflicting conclusions. Six months ago we went to MSKCC. It is a pre-malignant cluster(3) at this time in the right center portion of the pancreas. The surgeon feels that there is a 50/50 chance that the tumor will turn into a cancer, much the same as if a colon polyp is left alone. The right side where enzyme juices flow right to left is dilating with backflow because of the cyst/tumor location. After initial testing and six month follow up MRI with additional consult, a central pancreatectomy is to be performed. If this is not adequate at that time, a Whipple will be performed. As of now 40% of the pancreas will be removed, the left portion and right portion reattached, and the enzymes will flow to the intestines. Has anyone had a central pancreatectomy without going into the more invasive Whipple? Please advise if possible. Thank you. Aries Mon, 05 Dec 2005 00:00:00 GMT I am a 19 year old female and had a whipples procedure 6 years ago at the age of 13. I had a benign tumour on the head of the pancreas, so surgery was the only option.Without that operation, i am certain i wouldnt be here today. I live life like any other teenager, and to look at me, you wouldnt guess that i had major surgery at that young age. the only complications i suffered was 2 attacks of pancreatitis,(as i still have the tail of it left) and weight loss. apart from that, i am as fit as can be expected and im looking forward to a long and healthy life. but please remember, there are always people who have gone through the same thing who are willing to talk and offer support. all the best, sarah Sazza5 Sun, 11 Dec 2005 00:00:00 GMT Dear Tambar: I do hope your husband is doing well. My husband will be having the Whipple on Jan. 5th at Presbyterian in Dallas, one of the Drs in Dr. Katz office will be doing the procedure. We feel very confident that this will go well. Am now looking at the Oncologists in our area so we can have our Dallas Dr. refer to our preference. Is there anything/symptoms I should be looking for specifically post-op? Any post-op tips would be greatly appreciated. Kaezee Fri, 23 Dec 2005 00:00:00 GMT Dear K L, my mom had the whipple done on Sept.8, 2005, and it is a very tough, tough surgery. She was in surgery for 8 hours, hospital stay of 10 days. She will be finishing up her radiation treatments next week, a total of 28, 25 wide, and the last 3 will be directly on the cancer area, which was the head of the pancreas. She had her gall bladder removed, the dueodem, the head of the pancreas and 12 lymph nodes, of which 1 was diseased. She has also been going thru chemo, 2 weeks on, 1 week off. And after next weeks chemo treatment, her dr. is giving her about 3-4 weeks off of chemo, then starting it back up. She is taking gemsitibine. Her taste buds are gone, things that she loved before, she has no desire for now. If we can get 500 calories a day in her, we are having a good day. Last week she had and endoscopy done on her esophogus as she had a narrowing and things were sticking at the end of it, and while they were doing that, it was recommended that a PEG tube be put in her to try and help get more nutrition in her. Right now, things with mom are more mental than anything. She has lost a total of 74 lbs., sleeps quite a bit, very very fatigued. I know she feels like why am I doing all this, and I keep trying to encourage her that it will all be worth it in the long run. Her frustration level is probably at it's peak. The dr. suggested an anti depressant, and I said absolutely. This is my mom's second round of cancer. Four years ago she had stage IV melonoma, and against odds, came thru the surgery {2}, first one to have the melonoma removed, and then 32 lymph nodes removed. My Dad suffered with colon/liver cancer, and I have to say, this seems to be harder on my mom. Lots of patience, encouragement from the family, the Drs., faith, hope will get you and your husband thru this. A strong family, being there for each other, as it tears you apart to see your loved one suffering, is so important. Don't be afraid to ask questions to your dr., whether you've already asked them or not. And when your husband goes to the dr. for check ups, and any treatments he may have to have, if there is someone that can go with you, I would advise having that extra set of ears there, as all of this will become so overwhelming at times. I do lots of internet research, so when a Dr. says this or that, I know what he's talking about, and can have the right question to ask. Hang in there, and my very best to you & your husband. Keep me informed on his surgery. Lynne Mamaj Fri, 23 Dec 2005 00:00:00 GMT My goodness, your Mom is having such a difficult time. I am so sorry. We are going into this surgery with a great attitude, and maybe a little naively, but we feel all will be well. We know the surgical recovery and chemo is bad, but we are keeping an optimistic attitude. Right now, we are working on getting my husband as strong as possible for the surgery. As much protein as he will eat, and his preference is carbohydrates. I'm starting him on vitamins, especially C, as I've heard that promotes healing. He drinks a lot of V8 and a Boost everyday. He hates the Boost, but Ensure doesn't look like it tastes any better. We don't have much time to build him up, but we are trying. We caught this fairly quickly we think, but it is still 4 weeks between diagnosis and surgery. I wish I had someone else to take to Dr. appts, I think that is a very good idea. Do you have other siblings that help you? How is your father? Will keep your mom in prayers, K Kaezee Sat, 24 Dec 2005 00:00:00 GMT Dear K., Yes, my Mom is going thru a very tough time, but she is also one of the very lucky ones to be able to have this procedure done, as is your husband. You say you have 4 weeks before surgery, well, just to let you know, my mom's PC was found and diagnosed in early August, they went back to Florida mid August, we moved them back completely labor day weekend, and she had the surgery that week. Our surgeon told us that the cancer had probably been growing a couple of years before she started having symtoms. The only thing that started happening with Mom , and it had only been two weeks before we flew down to move them back, she started juandicing, so we were real concerned that it had affected her liver, but the duct was just blocked a little, and the other organs were not affected. Our surgeon had also told us that if he suspected anything when he first went in, he would not do the surgery, that he wouldn't put someone thru this kind of surgery if it wasn't going to help them in the long run. My Dad is deceased. 12 years ago. My Mom remarried, a wonderful man, so he is her main caretaker. Things are tough, but so is she, and all the prayers that have been said have been helpful. My thoughts and prayers are with you and your husband, keep in touch. Lynne Mamaj Sat, 24 Dec 2005 00:00:00 GMT My husband was diagnosed on Dec. 6th, I had noticed his color was off, and he was having a lot of stomach pain. However, like all men he procrastinated about seeing a Dr. If his buddies hadn't made comments at a funeral we attended, he would probably not have gone to the Dr for another couple of weeks. We are blessed by having a very "withit" Family Physician, and I happened to know of a good gastroeneroligst, she tried to put a stint in, but the tmour was pushing on the bile ducts, and she couldn't see wht she was doing, so a radioligist put a bile duct catheter in, which drained the bile, improving his color. The radiologist was also able to put in a stint, leaving the catheter in case it is needed. My husband is still having some stomach discomfort, but not like before. I am really proud of him, he is trying to eat a lot, drink V8 and cranberry juice, he is even taking vitamins, 'cause I want him as stong as possible for this procedure. This is a man who usually ate one meal every 24 hr and drank about a gallon of coffee with about 1/2 lb of sugar in it. Am trying to get him onto Splenda. The more I read on this procedure, the more messages I read, the more frightened I get. The Dr. told us it was the worst surgery one can have. I believe him after reading this message board. Be that as it may.....we still have a good attitude, determination, and hope. We are firm believers in the power of prayer, and my husband is on prayer chains, and lists from here to Calif. and east to Maine. I have put him in the hands of someone with real power, so I know what will be will be......just have to meet the challenge with courage and the peace of knowing the Lord is in total control. It is great that your mother has found another love in her life, and I know how hard it is for you to be far from her. My prayers are with you and yours and may your Christmas be filled with the laughter of children, the love of family and friends. May your New Years resoultion be easily kept. Kaezee Sun, 25 Dec 2005 00:00:00 GMT Dear Aries...My name is Russ, I am 61 years of age, and am a 5 year pancreatic cancer survivor. I didn't have the whipple procedure nor did I have a central pancreatectomy. I had a distal pancreatectomy where they removed 40%of my pancreas, (the tumor was in the tail), they also removed my entire spleen, a xslice of my kidney, and 5 lymph nodes. The cancer spread to the first lymph node but the others were clear. Today I suffer from diabetes as a result of losing 40% of my pancreas, I suffer from neuropathy, fatigue, pain, and nausea. But I am alive and these minor inconveniences pale in comparison to what other people are going through. Hope all is well with your husband. Best Regards, Russ Russell Sun, 01 Jan 2006 00:00:00 GMT Dear Russ - I wish you and your family the healthiest and happiest of new years. Thank you for informing me of your situation, and the five years since. Tomorrow is the scheduled surgery for my husband. As of the final pre-op consult on 12/21, the surgeon said the final outcome could either be the central pancreatectomy (which the surgeon feels will accomplish the removal of the IPMN and opening the duct that I had previously mentioned and the surgeon said there would be a 40% loss of the pancreas), the distal surgery (like you had) or the Whipple. Until the surgery begins, we won't know what procedure will produce the best results. As I said this is not a malignancy at this point, and the surgeon will do a frozen section. I will update you/this thread, as to the post op conditions. Again all the best to you in the coming days and years ahead. Aries Mon, 02 Jan 2006 00:00:00 GMT Dear Aries, I wish your husband nothing but the best tomorrow with his surgery. Please keep me abreast of his post-op condition. Thank you very much and I wish both of you A Happy & Healthier New Year...Russ Russell Mon, 02 Jan 2006 00:00:00 GMT Dear Russ - It's been a long day. Surgery started at 8:15 or so. Doctor paged us at 9:45 - cysts were in head/neck portion right to right center. Whipple procedure was in order from this point on. The cysts were bigger than in the scan. Due to the fluid content, they seem to come and go with scanning. Can't hit a moving target I guess. His approach was to remove the right portion of the pancreas, leaving 40% of the left portion. Left portion is still cystic, but not with the size of the ones being removed. At some point the left portion may have to be dealt with but he did not wish to remove the entire pancreas at this time. Too many complications if this were to be done. Gallbladder gone, some of the duodenum, bile duct resectioning. My daughter said what would have happened if we left everything alone. He'd be like a walking time bomb. This will require period surveillance and checking sugar levels, etc. More recommendations will be forthcoming within the next few days. Hospital stay 8-10 days, at home a good 4-6 weeks. My husband is 54 1/2. We'll take it a day a time. In recovery he did write, what time is it? and what did they do? so he was coming out of the anesthesia well. It been a long day and more to come. Again thanks for your interest. Jackie Aries Tue, 03 Jan 2006 00:00:00 GMT Dear Jackie, (my sister's name is Jackie)... Pancreatic cancer is a long drawn out battle and recovery procrss, and it causes much concern, fatigue, anguish, anxiety, and etc., etc. But there is hope...it is the last candle fluttering in the darkness while all of the others have gone out. My prayers go out to your husband and all of you in the family. If you have any concerns or questions of me please feel free to ask. Best Regards, Russ Russell Tue, 03 Jan 2006 00:00:00 GMT Hi Russ - During the frozen section analysis - top pathologist at Sloan looked at the tissue, etc. Benign at this point. Final report due next week. Observation of frozen section was more than a couple of minutes to be sure. This was a preemptive strike. Hopefully the results will be the same a week from now. Thanks for the prayers. Aries Wed, 04 Jan 2006 00:00:00 GMT Hi Russ - Just wanted to let you know that the final pathology report came back late yesterday and the IPMNs that were removed along during the Whipple operation were benign. The remaining tail portion will have to be observed two to three times during the year and beyond to make certain that these are not becoming problems as well. Barring any setbacks, discharge may be scheduled for sometime during the weekend, most likely Saturday. Smaller portions of regular foods tolerated, and every day will be a learning experience for us and the entire family. Aries Thu, 12 Jan 2006 00:00:00 GMT Dear Aries, Great News!!! My prayers will be with you and the family throughout the year. Russ Russell Fri, 13 Jan 2006 00:00:00 GMT Hi Russ - Homeward bound this morning. Thanks so much for your concern. The best to you and yours during the year as well. Jackie Aries Sat, 14 Jan 2006 00:00:00 GMT Hello Barry I was reading your message and wanted to get some information from you. My father was diagnosed with pancreatic cancer last week and he is going to see Dr. Levi on Wednesday. I can not find too much information on the web about Dr. Levi and am concerned to make sure he is getting the best care and course of treatment. We won;t know until Wednesday what stage this is at and what course of treatment willbe suggested. Since you were treated by Dr. Levi I am wondering if you can comment? My dad is 75 years old and currently very weak. They just finally discovered that this is what his problem is so we haven;t a clue how far along but the diagnosing dr said it has not mestastizied so I guess that is good news. Any advise from anyone on this is appreciated. I keep hearing the MD ANderson in Hosuton is th best place to go but I hate to disrupt their lives further if local practitioners are just as qualified. Wendyinsb Mon, 06 Feb 2006 00:00:00 GMT Wendy S and Barry, I saw that you both have experience with Dr. Levi. Could you please give me some information on him. I know that he performs a lot of whipples etc a year and that he is cheif of general surgery at Jackson, but I don't know anything else. Any info would be greatly appreciated (from anyone). Thanks so much, Michelle Milygo Thu, 08 Jun 2006 00:00:00 GMT Hi Michelle My father had the whipple procedure done by Dr. Levi in March. He is still recuperating but not due to the whipple. Dr. Levi did a great job and all reports are that his surgery was successful. Dr. Levi was very knowledgeable and expert although I would say that his people skills are lacking. That being said I'd rather have a Dr. who knows what he's doing once he cuts you open than one who has people skills. If you are looking for a recommendation re: Whipple then Dr. Levi is definitely your man. Good Luck. Wendy Wendyinsb Thu, 08 Jun 2006 00:00:00 GMT Wendy, Thanks for the quick reply. We don't know yet what my mom has. She has a mass that "may or may not be of pancreatic origin" and they suggested that she have a biopsy. The CT results were fairly inconclusive and they couldn't say if anything had spread or even what the mass was a part of. I am VERY scared. I called around and Dr. Levi was suggested, since he specializes in the pancreas. She has an appointment for Wednesday, but I am concerned that that is putting it off too long... however, Dr. Levi only sees patients on Wednesdays... so I guess we will have to wait until Wednesday. Do you think I should see if I can get her in to see another doctor sooner, or just wait for Dr. Levi? -Michelle Milygo Thu, 08 Jun 2006 00:00:00 GMT I can totally sympathize with your anxiety and your fear. I went through the same thing with my dad. We weren't sure even with the biopsy what type of cancer it was. He had a mass blocking his bile duct and Dr. Levi was able to get everything with the whipple - which we weren;t sure he was even going to perfrom until he opened up my dad. We are lucky that it isn't pancreatic type cancer so he may be ok. We are just going to monitor the lymph nodes now as my dad is too weak to have chemo. If your mom doesn't have pancreatic then I have been told the other type is very slow growing. I would wait for Dr. Levi since it is only a week as he will know and it seems that he can get the surgery scheduled quickly if that is what is needed. In southern FL I am told that he really is the best. Good luck to you both. W. Wendyinsb Thu, 08 Jun 2006 00:00:00 GMT Wendy, Thanks so much for your help and kind words. My mom is 62 and is in decent shape (she has high blood pressure and elevated cholesterol, but that's it), so hopefully she will be a candidate for any treatment he prescribes. Do you know how soon after the initial appointment it took for your dad to have his biopsy? How long after the biopsy did he have the whipple? We do know that there is no biliary distention, so I guess that is good... and besides back and epigastric pain, she has no jaundice or some of the other signs. The radiologist was unsure if the mass in connected to the pancreas. Apparently, it is hard to tell from the scan, but it is near the head of the pancreas. This all kinda came out of no where. She went for a routine gynecologist appointment and he felt the mass in her abdomen. He thought it was an enlarged liver, but it is a mass. She had been to an internal medicine doctor just the week before for the back and belly pain. He didn't even mention this possibility and gave her Nexium and pain pills instead! So did the ER doctor the weekend before the internist appointment. It is all so very frustrating. I am glad to read that Dr. Levi is very good. I was recently at Jackson for severe trauma (car accident), so I know that they have top notch equipment and doctors. Thanks again for all your help. -Michelle Milygo Thu, 08 Jun 2006 00:00:00 GMT Hi-I just came across your message re: central pancreatectomy.  My story sounds similar.  I have a 2 cm tumor in the neck of the pancreas.  The doctors feel that it is probably benign as I have had it for awhile.  In June of 2006, an attempt was made to enucleate it laproscopically, without success.  I am now going to pancreatic surgeons at Columbia Presbyterian in NYC-I see that you were at MSKCC.  How is your husband, who was his surgeon, and why did you choose that hospital and surgeon.  I was out at the Mayo clinic last March.  I hope that your husband is doing well, and that it was, indeed, benign. Curlgirl Fri, 05 Jan 2007 00:00:00 GMT  On 11/23/2005 Notsick wrote:I am interested in hearing from anyone who has had the whipple procedure and the results of the procedure. hi  my husband had his whipple procedure done on 11/15/06 and is doing pretty well. his spirits are pretty good right now but he did have to work through some depression and anxiety for a couple of weeks. he does better with smaller portions and snacks. this way he does not have as much bloating or gas discomfort. since this all came about he has lost 50lbs and seems to have stabilized at 180lbs. he is diabetic and his sugar is getting under control with very little sliding scale insulin needed now and we are actually able to decrease the lantus at night also. he still tires easily, but he is now lifting small hand weights and walking almost every day. we will see the cancer specialists in a week and begin chemo shortly thereafter. this makes us a little anxious, but we have come through so much in such a short time. God has blessed in so many ways. Jimandkathy Tue, 09 Jan 2007 00:00:00 GMT hello i was wondering if you could help me out i am scheduled for the whipple on feb 28 and i am looking for someone that has had this surgery to help me with alot of questions i have. i do not have cancer but my pancreas is diseased and my bile duct is blocked two attempts at a stint have failed and my life has been misreable and painful and tons of medicine for a year. so the whipple is my doctors only suggestion. thanks for your help in anyway. anita Anita23 Tue, 30 Jan 2007 00:00:00 GMT hello,my name is anita and i am scheduled for a whipple on feb. 28 2007 i do not have cancer thank the lord, but  my pancreas is dieseased and calsifed my bile duct is blocked, and two attempts at a stint have failed, i am very anxious and scared i have never had any surgery .i am 47 soon to be 48 and never had any surgery . i am pretty healthy otherwise this painful problem. i am on many medications that help. but i feel misreable all the time.can you tell me what to excpect from the suregery and recovery of the whipple procedure. any help would be greatly appreciated. i am glad your husband is doing better but it sounds like he is having a hard time with his recovery. thanks alot and god bless anita Anita23 Tue, 30 Jan 2007 00:00:00 GMT  On 11/27/2005 Blg2789 wrote:Hi, Yes I had the Whipple procedure in September 2004. I was diagnosed with pancreas cancer in April 2004 and did chemo prior to the surgery to reduce the tumor. I had the surgery done by Dr. Joe Levi at the University of Miami Florida, the Hospital is Jackson Memorial. He does over 70 of these procedures a year and I also would recommend that you get someone that does a lot of these procedures. It is not an easy surgery so you want to have someone that has lots of experience with this procedure. Please let me know if you have any more questions about the surgery. Thanks, Barry hello  i noticed you had a whipple done a couple of years ago along with chemo. my husband recently was diagnosed with pancreatic cancer and had the whipple done in november. he did quite well with that and has had 3 tx with chemo (gemzar) and will be starting radiation in the next couple of weeks. are you still taking any kind of treatments? are you cancer free at this time? do you still have to have any kind of follow up scans or testing? how do you feel mentally and physically? are you back to work? i hope you do not mind all of these questions. i would appreciate any feedback you could give to us. thankyou. jimandkathy Jimandkathy Tue, 20 Feb 2007 00:00:00 GMT  On 1/30/2007 Anita23 wrote:hello,my name is anita and i am scheduled for a whipple on feb. 28 2007 i do not have cancer thank the lord, but  my pancreas is dieseased and calsifed my bile duct is blocked, and two attempts at a stint have failed, i am very anxious and scared i have never had any surgery .i am 47 soon to be 48 and never had any surgery . i am pretty healthy otherwise this painful problem. i am on many medications that help. but i feel misreable all the time.can you tell me what to excpect from the suregery and recovery of the whipple procedure. any help would be greatly appreciated. i am glad your husband is doing better but it sounds like he is having a hard time with his recovery. thanks alot and god bless anita Hi Anita,        Hope by now you are recovering from your surgery.I had my whipples 9 years ago for ?cholangio-carcinoma which turned out to be a benign lesion.Would like to hear from anyone with similar problem who has had a whipple to compere notes of current health problems relating to the surgery. dylanfan Sat, 29 Sep 2007 00:00:00 GMT