CancerCompass message board discussion started by Son of Mary jo on 2/8/2008 http://www.cancercompass.com/message-board/message/all,20760,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My Mother has stage III Pancreatic Cancer, diagnosed June 2007. She has been receiving Chemo/Radiation/Genzar at the City of Hope Hospital. In June, she had exploritory surgery at a different Hospital and they determined it was localized but inoperable. Since then, the tumor has grown from 1.7 MM to 2.2 MM but has not spread.She was told yesterday by the City of Hope Doctor's that an operation is available to her, where they would open her up to see if the Whipple Method is an option. The Doctor's give her a 25% chance of receiving a Whipple Method Surgery and 20% of living 5+ years if she receives that surgery.Some Background: She is currently on disability, receiving SSN. My Brother lives at home with her but has a full-time job. She is strong, currently in no pain and again, the tumor is sustained.My question is: Given the quality of life scenarios and the recovery time, I am interested in the good, bad, ugly stories that exist for the Whipple Method. What would YOU do?  Son of Mary jo Fri, 08 Feb 2008 00:00:00 GMT I am so sorry too hear that your mother is dealing with PC. Thisdecision is dificult and totally up to your mother but you are right toget otheropionions.  The only good chance to beating this disease is tohave the Whipple and since she is in stage lll with no mets, I believeshe is a good candidate to live much longer if the Whipple can becompletedsuccessfully.  On the other hand it is a very tough and longsurgery in which complications can arise afterwards.  If yourmother is strong and is mentally ready to fight this disease Iwould advise my mother to go for it. You did not mention how old your motheris.  As for me, I am  56 with stage lV inoperatable PC, nomets and I would have a difficult time deciding myself. Take care,Jaice                                       Infoquest Sat, 09 Feb 2008 00:00:00 GMT  Thanks for the reply...she is 61 years old. Son of Mary jo Sat, 09 Feb 2008 00:00:00 GMT Deciding can be a hard decision.  If she decides to have a whipple, go somewhere that do at least a hundred whipples a year.  That is very important.  I am sorry to hear they did exploratory surgery and didn't do a whipple.  I had the slow growing PC Stage IV and it had mets to my lymph nodes and liver.  I don't think the doctors knew that ahead of time.  But the whipple saved my life.  If PC has not mets, then she will have a better chance to live longer.  Dawnella Dawnella Sun, 10 Feb 2008 00:00:00 GMT It is a tough decision, or at least would be, for me.  My DH opted for the surgery even though, in his case, he knew it would be an extemely complicated whipple and a long shot for success.  The good news is that his margins are clear and lymph nodes negative.  The bad news is that he has had many complications that has had him in the hospital as much as home in the several months since his surgery.  Our lives consist of hospital and doctor appointments and constant care at home.  He does not have much quality of life, but is alive, months past his predicted life span.  At the moment, you have hit us at a down point.  He is very ill in the hospital at the moment.  There is still hope, though, that he may turn around and return to the fight.  Please don't let our experience be the only one to guide you.  There are many positive stories as well.  Since you asked for good and bad, I thought I would chime in.  If you asked my DH today would he do it again, he would probably still say "yes." AnniePG Sun, 10 Feb 2008 00:00:00 GMT Thank you very much and good luck to both of you. Son of Mary jo Sun, 10 Feb 2008 00:00:00 GMT That is good advice and insight, thank you for sharing your story! Son of Mary jo Sun, 10 Feb 2008 00:00:00 GMT You pose a very difficult question. For me the Whipple was for a cure. For your mom, I am not sure that I hear you saying that.....with pancreatic cancer, there is no cure without the Whipple as far as I know. It did take some time to recover and then I had chemo and radiation. Of course I was 23 years old at the time.Highly unusual.  My surgery took almost 10 hours. A week in ICU and a total of 17 days in the hospital. 16 of those days were without any food or fluid. Lots of tubes, lots of pain control. There is a 20% mortality rate just with the surgery and complications. Well worth the results though ...... I sit here a relatively healthy cancer survivor of 39 yrs old. A chronic pain problem (tolerable) and a bad scar (cosmetic) are all that even remind me that I went through this cancer. It is a big surgery. Is your mom on disability because of the cancer or because of another problem? I think that would make a difference to me. If they go in and find that it is inoperable, then they close her up and she heals....this happened to my mother in law. She was diagnosed about five months after my diagnosis. It was pure coincidence by the way. I had just finished treatments and after five months was going back to work part time. She jaundiced. Just like I did and they found a tumor just inches away from where mine lay. We had the same doctors but with different results. With her, the cancer was too vascular to be removed. Mine was 3mm and hers was the size of an orange. She lived another 11-1/2 months. So time is of the essence when deciding. It is a very aggressive cancer usually. We both had an adenocarcinoma. 5% survival rate after five years with no treatment I believe.  She lost half her body weight, and was in some pain in the last year of her life. Either way you look at it....there is no easy path. Good luck in your decision making. Please let us know how she progresses. Traci    justchatting2007 Mon, 11 Feb 2008 00:00:00 GMT Thank you Traci...great imput! I will be sure to share this with my Mother... Son of Mary jo Mon, 11 Feb 2008 00:00:00 GMT  On 2/10/2008 Son of Mary jo wrote:Thank you very much and good luck to both of you. If Whipple was an option and that would have extended her life, I think we owe it to our parents to do it.    Resolute Mon, 11 Feb 2008 00:00:00 GMT Have the doctors mentioned GTX : Gemzar, Taxotere, and Xeloda chemo? My father was diagnosed with PC that spread to his liver and stomach march '07 with 1-3 months to live. They have had him on this agressive chemo and today he is still alive.  LoveMyDad81 Mon, 11 Feb 2008 00:00:00 GMT She's on Gemzar now and has been since July on and off and was on Xeloda for 5 full weeks. Tarceva has been introduced in the last 6 weeks. Son of Mary jo Mon, 11 Feb 2008 00:00:00 GMT My boyfriend, age 63, was diagnosed last in April 2007   Our original trip to U of A in Birmingham, was not very positive or hopeful. We checked out M D Anderson in Houston and did a self-referral on their website. We were there in June and July for 5 weeks of chemo & radiation, then a month to regain weight & strength and then he had the Whipple on Sept. 7th.  (M D Anderson staged him at Stage II, but they only use three stages there, not the four stages that a lot of places use).    He was in the hospital for 10 days recovering, and then we had to stay in the area for another 2 weeks, until they released us to come back to N W Florida.  It was a difficult recovery, and he was a difficult and frequently uncooperative patient.  He had problems with ascites (fluid leaking) after the surgery, so they re-stitche the fascia about 5 days after the sugery and left the wound open with retention sutures...not a pretty sight.  I packed an open wound for 3 months before it finally healed, but heal it did and he is doing well now.  He eats very well, had realized that his life can be pretty much normal again, and has recently started walking for exercise and getting himself ready to start some light jogging.  He used to run 5 miles a day prior to getting sick with this.I'm telling you all this because he is close to your mom's age and is doing very well.  We talked to a few survivors of pancreatic cancer at M D Anderson, including one who has survived 14 years from diagnosis.  I'd say don't give up.  If your mom is in reasonably good health otherwise and wants to live, support her in the decision.  Good luck to you and your mom.   dmc1944 Mon, 11 Feb 2008 00:00:00 GMT Thank you for taking the time to share your BF's story...I will be sure to share it with my Mother. Son of Mary jo Tue, 12 Feb 2008 00:00:00 GMT  On 2/11/2008 Son of Mary jo wrote:She's on Gemzar now and has been since July on and off and was on Xeloda for 5 full weeks. Tarceva has been introduced in the last 6 weeks.Will they not put her on all thre? I know that by some miracle my father is still a live today.  Bless you and your Mother  I hope all turns out well LoveMyDad81 Tue, 12 Feb 2008 00:00:00 GMT  On 2/8/2008 Son of Mary jo wrote:My Mother has stage III Pancreatic Cancer, diagnosed June 2007. She has been receiving Chemo/Radiation/Genzar at the City of Hope Hospital. In June, she had exploritory surgery at a different Hospital and they determined it was localized but inoperable. Since then, the tumor has grown from 1.7 MM to 2.2 MM but has not spread.She was told yesterday by the City of Hope Doctor's that an operation is available to her, where they would open her up to see if the Whipple Method is an option. The Doctor's give her a 25% chance of receiving a Whipple Method Surgery and 20% of living 5+ years if she receives that surgery.Some Background: She is currently on disability, receiving SSN. My Brother lives at home with her but has a full-time job. She is strong, currently in no pain and again, the tumor is sustained.My question is: Given the quality of life scenarios and the recovery time, I am interested in the good, bad, ugly stories that exist for the Whipple Method. What would YOU do? Hi,Your story is so much like my husbands.  He was diagnosed with Cancer in June, 2007. He is 59 years old.   He bacame Jaundis , they put two stints in.  He could not live with just that.  They did a Whipple procedure the beginning of July.  The cancer was found in the Bile Duct the Tumor on top of the pancreas and 2 lymoh nodes.  The Whipple procedure consisted of taking part of his stomach, 40% of his pancreas, all of his gall bladder and 31 lymph nodes.  He has done remarkably well with this operation.  He spent 10 days in the hospital.  They diagnosed him wtih Bile Duct Cancer.  They said it did not get into the pancreas jus tthe tumor but they took 40% o fthe pancreas to be on the safe side.  So from July 13 when he had the operation to the beginning of Aug. he then started the chemo.   In Sept. he started chemo., (Gemzar), then Oct., Radiation with Chermo., 7 weeks every day for 5 days and then a 3 week break.  He then started up again with chemo. and has 2 treatments left.  His levels have been very good.  My husband had the Whipple procedure done at Mass. General in Boston.  What a phenominal Dr. and hospital.  We were very blessed to be sent there.  The only minor complication that my husband had was part of his incision about 2 inches became infected.  Because of the healing process he could not start the Radiation for awhile.  Other than that he did GREAT.Now it is hard for him to eat small frequent meals.  He says he cannot acclamate himself to do that.  So he will eat 3 meals, by dinner at times he only eats a little because he ate more during the other two meals.  Also,  he can't handle sugar by itself.  He can maybe have cake or candy with a meal but in between meals if he eats any sugar he gets an upset stomach.  We are so happy that the operation turned out so well for my husband.  I will send a prayer for your MOM.    Nvike Tue, 12 Feb 2008 00:00:00 GMT Thank you,,,this story will be especially good to share with her. Son of Mary jo Tue, 12 Feb 2008 00:00:00 GMT Today is 8 months after my Whipple. I had Ampullary carcinoma of the Ampulla of Vader. The Whipple procedure was successful in removing the tumor, but also took 1/3 of the stomach and 1/3 of the pancreas, duodenum, gall bladder, etc. I lost around 20 pounds from the surgery and reduced appetite from the stomach reduction. I am 51 years old, male, and had never been in the hospital or even had an IV before this procedure. The hospital stay was 11 days total (8 days post op) and it was amazing the atrophy that took place during this time. My stamina was almost non-existent at first, but gradually got better and better. I never had any dietary restrictions and still do not, but there are certain foods that seem to cause problems. For me, milk, onions, shellfish to name a few. The problems are not that bad to worry about avoiding these foods, just now I know there may be some reaction. I used to take Aciphex for heartburn, but now I take nothing except Centrum Silver vitamins. No other drugs whatsoever and my blood work is perfect, cholesterol is 150, just bilirubin is high.I am lucky to have never needed Chemo or radiation mainly because they caught this early (4 cm) when it presented itself after I showed signs of jaundice. I had a few days with unknown fevers, but they never found anything until the jaundice. I am lucky the attending was demanding of the tests as I thought it was just hepatitis from traveling. I am fortunate to be able to tell a positive story, but also encourage you that the key to recovery is determination, good spirirts, and a sense of humor. Be patient with the recovery and do not expect things to change overnight. I did get 15 rounds of golf in before winter and found I have a draw now, but less distance. The stomach muscles will take a long time to heal and you always know the scar is there, but looking at the alternatives, this is not so bad. There are definitely some good stories out here and I hope that mine will help anyone anxious about their future. happytobehere Wed, 13 Feb 2008 00:00:00 GMT As I type this message, my 60 year old father is 5 hours into the Whipple procedure in St George Hospital, Sydney, Australia.  He was diagnosed Christmas Eve (2007).The first thing I would like to say to a lot of people who have posted on this website is SHAME ON YOU.  It is because of you that when we were told that dad was one of the lucky ones with an operable tumour - he turned it down.  That’s right... he could possibly even be cured given the early state of this cancer, yet he turned it down because he felt the pain and risk would not be worth it and decided to pursue 'alternative' treatments such as diet and vitamin supplements.  Too many horror stories and evangelical miracle cures.Luckily for my family, dad came to his senses and was given the right information by qualified practitioners.  Yes it will be hard, and as a family we have had a terrible few years... needless to say we are all terrified out of our minds right now.  Many people like my family come to sites like this at times like these looking for information, reassurance and advice, and while it is of utmost importance to tell the truth it is also important that you do not spin such a negative web that scare people away. So now - I would like to THANK all the wonderful people for telling their stories who have managed to turn sadness into happiness and sickness into health.  Its not all about me at the moment but it has been nice to take a break from watching the clock to read a little bit more about what is going on.Good luck to everyone who is dealing with this, and I hope that we are all able to emerge with the most positive results possible.  Everyone is affected by cancer so the least we can all do is try to make the time we have with our families and friends happy and positive. cielg Sun, 24 Feb 2008 00:00:00 GMT I'm new to this site as my father was just diagnosed 10 days ago with PC.  He was given the option of Whipple IF the cardiologist and pulmonologist gave him the green light.  He has extensive other problems including kidney failure (his is on renal dialysis 3X a week), congestive heart failure, and diabetes for which he takes insulin.  He has opted NOT to do the whipple but to try the Cyber Knife instead.  For him, we were concerned that the recovery time and chance of infection following the surgery were not worth it.  He takes forever to heal due to the diabetes.  I think you have to weigh the benefits with the possible side effects.  I wish you and your mother all the best with this decision.  It is certainly not an easy one.  I'm not sure if we/he made the right choice, but it seems to be the best one for him.  His quality of life seemed more  important for the time he has remaining.   dadsnum2 Fri, 14 Mar 2008 00:00:00 GMT Thank you for the reply...what is cyber knife? Son of Mary jo Fri, 14 Mar 2008 00:00:00 GMT Cyber Knife is a new technology developed at Stanford I think about 7 years ago.  It was mainly used for brain tumors but is now used in PC too.  It is radiosurgery.  It aims high dose radiation directly at the tumor with little spread, within millimeters, to other surrounding organs.  Check out other messages on this board for more info.  Also there are a few websites that discuss it.  The benefit is that it is totally non-invasive we just don't know how effective it is yet.  dadsnum2 Sun, 16 Mar 2008 00:00:00 GMT  On 2/13/2008 happytobehere wrote:Today is 8 months after my Whipple. I had Ampullary carcinoma of the Ampulla of Vader. The Whipple procedure was successful in removing the tumor, but also took 1/3 of the stomach and 1/3 of the pancreas, duodenum, gall bladder, etc. I lost around 20 pounds from the surgery and reduced appetite from the stomach reduction. I am 51 years old, male, and had never been in the hospital or even had an IV before this procedure. The hospital stay was 11 days total (8 days post op) and it was amazing the atrophy that took place during this time. My stamina was almost non-existent at first, but gradually got better and better. I never had any dietary restrictions and still do not, but there are certain foods that seem to cause problems. For me, milk, onions, shellfish to name a few. The problems are not that bad to worry about avoiding these foods, just now I know there may be some reaction. I used to take Aciphex for heartburn, but now I take nothing except Centrum Silver vitamins. No other drugs whatsoever and my blood work is perfect, cholesterol is 150, just bilirubin is high.I am lucky to have never needed Chemo or radiation mainly because they caught this early (4 cm) when it presented itself after I showed signs of jaundice. I had a few days with unknown fevers, but they never found anything until the jaundice. I am lucky the attending was demanding of the tests as I thought it was just hepatitis from traveling. I am fortunate to be able to tell a positive story, but also encourage you that the key to recovery is determination, good spirirts, and a sense of humor. Be patient with the recovery and do not expect things to change overnight. I did get 15 rounds of golf in before winter and found I have a draw now, but less distance. The stomach muscles will take a long time to heal and you always know the scar is there, but looking at the alternatives, this is not so bad. There are definitely some good stories out here and I hope that mine will help anyone anxious about their future.We have a similar case except that I had my whipple when I was 40, I'm female and survivor for 16 years now in fact going 17 this coming April.I had dietary problems after few weeks but this is normal. I ate steam rice and fat free food, hot soup, but rice perfectly suited my appetite. Enjoy your life and I wish you long life to live like me. By the way, I am diebetic type 2.   joytothe world Fri, 28 Mar 2008 00:00:00 GMT