Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,2275,0.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ hii'm completely new to this site, but have been reading your messages after i found the site through a google search. my cousin has been diagnosed with small bowel cancer and sounds very similar to what you are describing. sorry for sounded silly, but can you please explain what a whipple is. my cousin is only 25 years of age, and had complained of stomach pains for almost a year and began losing weight rapidly for 6 months when the docs finally decided on a barium test (a 2nd one, as the first was clear). he underwent surgery almost within days of being diagnosed, but they could not remove the tumour as it was at the head of the duodenum, thus too near the stomach, and although i have not read his medical records i suspect they had moved to his lymph nodes. they somehow bypassed the tumour, and closed him up again, i dont think they gave him much info as he was back on solid food very quickly (my aunt had colon cancer and i had some idea of what patient should consume after such surgery). he's in a very bad way at the moment, he had 6 weeks of chemo after the surgery, with quite severe side effects, and at the moment he's continuously losing weight. is there a specific drug used in chemo for duodenal adenocarcinoma that might help.... although i know every cancer is different, i feel incredibly helpless as i am in a different country to him, and he never bothers us unless its an emergency and for them to contact me i know he's desperate. if possible please can you explain the whipple thing, and also what chemo u underwent. were there any food items advised. any advice will be much appreciated. thanx shahin shahin Tue, 15 Jul 2008 00:00:00 GMT Hello All, My mom was diagnosed with Duodenal Cancer in January of this year.  They attempted the Whipple but once they opened her up they realized that one of her lymph nodes in her major artery to her heart had been replaced by the tumor and it was too dangerous to proceed.  We finally spoke to an oncologist yesterday she will begin weekly chemo treatments in the next 2 weeks in hopes to shrink the tumor and ease her pain.  It's tough to see the person who holds you together become weak. I have also been having a hard time finding any information on Duodenal Cancer but I noticed that the Mayo Clinic refers to it as Small Bowel Cancer.  There is a little more information if you do that search.  I wish you all the best with your loved ones. zjewel Wed, 19 Mar 2008 00:00:00 GMT we have found a very good website with people dealing with duodenal cancer it is in yahoo groups duodenalcancer@yahoogroups.comit has been very helpful to share our experiences on this group with people dealing with this rare diseasegood luck Belinda1 Sun, 24 Feb 2008 00:00:00 GMT My brother in law just got diagnosed with stage 3  duodenal cancer in December.  He is 44. He had a whipple in January and an infection post op which put him on 3 weeks of antibiotics at home through a Picc line.  He just stated chemo this week and is already having a tough time with the nausea and vomiting.  I agree there is so little information out there becasue it is so rare. So any feed back you can give would be helpful.Audrey AudreyMS Fri, 22 Feb 2008 00:00:00 GMT My husband has BAC lung cancer diagnosed May 2006. He now has been diagnosed with duodenal cancer! Just when we had accepted the BAC now this comes out of left field. So he has 2 rare cancers...now what is the luck of that?? On Monday he is having a stent put in to hopefully allow him to eat again. Right now the tumour is completely blocking his duodenum. I hope to talk with his dr tomorrow to find out more..sighs Iqfem Wed, 14 Nov 2007 00:00:00 GMT Somehow my post about just having been released from Stanford Hospital after a modified Whipple must not have gotten posted, as I don't see it.Re the Whipple. The most important thing is to verify that the contemplated surgeon has LOTS of experience with this procedure. My operation took less than five hours 1 1/2 weeks ago. I am eating (though with little appetite) and have been out of the hospital for three days. Can anyone summarize the effective chemo therapy agents? I've read that 5-FU isn't very effective, yet many of you report that that is what was given. What are other therapies?Is there any source that lists them and their effectiveness?  Thanks, Alan   lechefgerard Sat, 25 Aug 2007 00:00:00 GMT Hi TammyMy husband has just been diagnosed with Duodenal Adenocarcinoma and is waiting for a whipple operation at the royal London, as you may guess we are devastated and do not know what the survival rate is, he has had a c.t. scan and been told it has not spread so we appear to be very lucky! it has helped to read your story and to know that there are other people like us who are going through this nightmare, perhaps someone could let us know how long the op is and the recovery time as we both are still at work at the moment, RegardsMeg  Ben_and_meg Thu, 12 Jul 2007 00:00:00 GMT Hi Tammy. Sorry to hear about your mom, but glad to hear that things are going well. As most people  on this site, I'm searching for more info. about duodenal cancer -- the info. out there really is limited & not really reassuring. My quest has started because my brother at age 37 was diagnosed with "ampullary adenocarcinoma". Ampu. what?! So rare that most people, including me, have no idea what it is. Anyhow, he was due for a Whipple this past November, but they found liver mets. & would not operate. We were shocked & defeated. It took us a good few days to compose ourselves & realize we needed to get a second opinion. So, off we went to Mass.General for our second opinion. They have a great Gastroentestinal Wing that took all of our scans, blood work, slides etc. & did their own investigation into the info. we brought to them. Well, this "ampullary adenocarcinoma" is duodenal in nature & now being treated as a colon cancer. He has recently started his chemo. regimen (Once every two weeks -- combo. of 3 drugs & one "take home" that he wears for 3days & then goes to get it unhooked). His 1st session went ok - only sensitivity to cold this far. His spirits are ok.  We're praying for the best. Please send along any more info., thoughts, suggestions, etc. It's very therapeutic to talk with others in this situation.God Bless you all.  Anarn Fri, 02 Feb 2007 00:00:00 GMT Hello,My name is Tammy and my mother was diagnosed back in June of 2004. All I can say is my heart goes out to everyone who has been on this message board. I started out on this site trying to find research for my school paper. At the age of 33 I did not think I would be doing a paper on Chronic Disease. When I decided to do this topic I thought of my mother. Everyone knows this type of cancer is fustrating because of the limited resources. I, too, have tried to go online to get info for my report but I think my mom, she is a survivor, will be able to give me all the info I need. Whoever is looking to the web for info on this rare cancer do not get completely discouraged. When my mother was diagnosed I wanted to know everything but all I kept finding were sites that gave her a very low percentage survival rate. It was devastating and depressing. My mom is my best friend and I felt it was not fair for her to go at such an early age. She was 51 at the time. My mom went through this horrific time with her family by her side. I hope we never see it again. My mom also had the whipple procedure. When the tumor was found it was too large to operate because it was too close to major arteries. She had all her treatment in Worcester, Mass at Umass hospital. She went to her dr's at home in Ct for back pain originally but they never found anything, so they said. When I got the call back in June 2004 from my sister after they went to the dr's, she was crying so I knew it was bad. It is very hard to even talk about it now because all those feelings are here now when writing this message. Just don't give up and make sure you all get second opinions. If we did not my mom would not be here. She went thru hell but she survived. She had the 10hr surgery, had 1 kidney removed and part of her stomach among other things. She was then on a feeding tube for about 6 wks. Thank god my brother moved in to take care of her. I had just moved an hour away a month before she was diagnosed. I had 2 children and wanted to be there for her everyday, I am the eldest. It was very hard to watch her in pain. She was only 100lbs to start but then was around 70lbs. That Christmas was very sad. I thank god for letting her stay with us. I don't know what I have done without her! Everybody hang on but don't give up. I know there is not a lot of information on the web but do whatever steps necessary. The dr's have told us recently she should not have survived. They did not think anything they tried was going to save her.You all are in my thoughts. My mom is living proof that there is hope. Tammy Tlj622 Fri, 02 Feb 2007 00:00:00 GMT Joyce, I have recently found this message board and what a wealth of information. My father who was 80 this year was diagnosed with duodenal cancer Stage 3 August 2004 and had a whipple done at Sloan Kettering November of 2004. He had his follow up treatment in Florida where my parents have a winter home. They live in Pennsylvania during the summer. He had chemo and radiation in January 2005. He had the usual side effects but did fairly well until about a month ago. He started with abdominal pain and was worked up by a Gastro. physician. His endoscopy showed gastritis which he was treated for as well as taking Percocet. But did not get relief except if he took pain medications. I encourged him to go back to the oncologist. They did a cat scan and it showed a lung nodule which they had been watching but it had grown. Nothing showed in the abdomen. They did a needle biopsy of the lung nodule which showed the same adenocarcinoma of the duodenum reoccured. They discussed surgery but decided to do a Pet Scan. This showed two additional areas in the abdomen the light up. They can not biopsy them but have decided to do chemo. He started this past monday with 5FU, Leukovoran and oxyplatin.Good luck with your dad, Sherri Irishjar Thu, 11 Jan 2007 00:00:00 GMT Joyce. My father, also age 85, was just diagnosed with duodenal cancer. While it does not appear to have spread to the lymph nodes any organs, the surgeon did not paint a favorable picture. Although my father is otherwise in good health for his age, the surgeon indicated that he may not survive the whipple procedure. I am very intersted to know more about your father and how he is doing. Thanks, Jim Jimmcc Fri, 10 Nov 2006 00:00:00 GMT Joyce. My father, also age 85, was just diagnosed with duodenal cancer. While it does not appear to have spread to the lymph nodes any organs, the surgeon did not paint a favorable picture. Although my father is otherwise in good health for his age, the surgeon indicated that he may not survive the whipple procedure. I am very intersted to know more about your father and how he is doing. Thanks, Jim Jimmcc Fri, 10 Nov 2006 00:00:00 GMT Good Afternoon, My name is Amy and I just learned that my mother-in-law was diagnosed with this cancer last week. I am at a complete loss. I have been searching the internet trying to find answers, but have not found much. I feel lucky to have found this message board. I am so sorry to hear of all the people that have been affected by this type of "rare" cancer. I am devestated with this news of my mother being ill, as she is my last surviving mother (that is a long story). Anyway, she didn't really have any details for me to go on since the doctor told her the "C" word she hasn't heard much of anything since. She is scheduled to see a specialist tomorrow (Oct. 3rd) and a surgeon right after so I won't have any more info until then. She did say that the doctor told her that he didn't have, in his words, "I don't have any good news for you at all" and also told her that she had less than a 50% chance of surviving. I am just beside myself with this news. I see that there is hope through reading all of your posts from all of the survivors of this disease. But I am felling pretty hopeless for my mother-in-law given what the doctor has told her. I know that she has been suffering from Ulcer type symptoms since before the birth of my daughter more than 13 years ago. Could this mean that she has had this for that long? Why hasn't it been found prior to now? She was involved in a major car accident just over a year ago and was hospitalized for several weeks, underwent several surgeries and nothing was discovered. Her most recent symptoms have been loss of taste and a bitter taste associated with anything sweet. Has anyone had these symptoms? I am just reaching out for some insight into this horrible disease. Any information would be greatly appreciated. I pray for everyone on this board and the families that are going through this with you all! Thank you for listening. Mstrnsrvnt Mon, 02 Oct 2006 00:00:00 GMT hi Darcy, sorry to hear about your husband, we live in australia. There is a very good website in yahoo groups http://health.groups.yahoo.com/group/duodenalcancer/ re. duodenal cancer where survivors talk about their treatment and where they are currently going for treatment within america. good Luck, Belinda and Reini Belinda1 Tue, 13 Dec 2005 00:00:00 GMT Hi, My husband was diagnosed about a month ago with duodenal.Last week he went in for the whipple and the duodenal cancer had gone into his pancreas and spread to the lining of his abdomen. They only bypassed his tumor and told us to do Chemo. The fact that it is duodenal cancer in the ancreas is better than the opposite. I am praying through chemo th tumor will shrink and the lining will go away as well. They say the lining cancer he can survive. Where did you go for chemo, do you know a surgeion who would possibly go bac in. Do you think we have a chance? He is the greatest guy and is willing to fight this thing. Any info you have wold greatly be appreciated thanks darcy Darcy Mon, 12 Dec 2005 00:00:00 GMT Belinda: That is wonderful news about your husband, and just in time for the holidays!! I also saw your message on the Yahoo site about the blood tests. That is very interesting! I have been going in every 3 months and having the liver function test, the CEA and several others (CBC panel, I think). Since this cancer usually spreads to the liver, sometimes the liver function test can spot it early. BUT, the blood tests are certainly not a guarantee that there is NO cancer in your body. I personally feel better having the tests. Especially since my cancer didn't show up on the CT scan at first. The other interesting thing is I have never had a PET scan; my dr. said there were no benchmarks for this type of cancer (or something to that effect). I guess it just goes to show how different each dr. is! I will continue to pray for Reini to remain cancer free!! I have a CT scan in Jan.; it will be my first one in a year. I will let you know the results. Happy Holidays to you and your family!! Janet Janetl Fri, 02 Dec 2005 00:00:00 GMT Hi janet hope you are well, just thought id let you know the good news that all of reinis scans were clear. if we dont speak before christmas have a wonderful holiday and a happy new year take care , Belinda Belinda1 Tue, 29 Nov 2005 00:00:00 GMT Belinda: Sorry I am so slow to write back. I was waiting to see my dr. today to ask her about the CEA levels (tumor marker) that you had asked me about. My CEA at this checkup was .9 and my dr. said that when I was diagnosed, it was 2.4. But, there was a note on my lab report about the different "assay methods" used to measure the CEA. So, you may hear other people talk about much higher numbers, and that must mean that different assay methods were used. Also, the normal range indicated on the lab report is less than 2.5, so I was actually within the normal range when I was diagnosed. But my dr. thinks that since it is so low now, then a rise in the number could be a flag. Anyway, I am feeling well and all of my tests were good, so I have another 3 months before I have to go back! I did have a few days of nausea a few weeks ago and I was thinking it might be scar tissue in my intestine. I have not found anyone else who only had a resection; everyone I hear from has had the whipple, so their after surgery symptoms might be different. I hope that Reini is feeling well and enjoyed his retreat. I would like to read that book you talked about; it sounds interesting! I would also like to make others aware of the cancer center that someone mentioned in the Yahoo group. It's the Massey Cancer Center in Richmond, Virginia. They specialize in GI cancers and treat hundreds of duodenal cancers a year. It sounds like a good resource! Blessings to all, Janet Janetl Fri, 09 Sep 2005 00:00:00 GMT Hi Janet, I am sorry I replied to you on another message thread but I thought I best reply to this message so that Cancer Compass will send you an email that I responded (Please refer to the message to Lisa). Hope all is well. Belinda Belinda1 Wed, 24 Aug 2005 00:00:00 GMT Hello Joyce, Sorry to hear about your father. I must admit I am very impressed in how he pulled through the whipples. I have been told that it is one of the biggest ops in terms of what the body has to go through. Take Care Belinda Belinda1 Wed, 24 Aug 2005 00:00:00 GMT Hello All, I am so sorry I have not responded for some time. We just got back from a much needed holiday. My husband is on a 10 day health retreat at the moment, it is part of the Gawler Foundation, in Victoria, Australia. Ian Gawler had bone cancer some 20 years ago, it returned and they thought that it was terminal,the medical profession could no longer help so he turned to holistic treatment, meditation, diet, juicing etc and he has been cancer free for many years since. I am sure you can get a copy of his most popular book through amazon. The book is called "You Can Conquer Cancer". We read this before he went into have the whipples last year. Ever since reading this my hubby has 3 fresh vegetable juices a day, meditates and now since completing chemo takes quite a number of supplements, vitamins and minerals. Janet it is so good to hear you are well, reini's next tests are in November, but he will have more blood tests next week. I am not sure if I asked you before what you tumour marker number was? Reini never had one, I think it was about 0.6 but he is low in iron and I am not sure what that means. LisaI am sorry to hear about your brother, I know that they said they would not operate if they found cancer elsewhere with my hubby prior to doing the PET scan, but I think they use radiotherapy first with chemotherapy to reduce the tumour size prior to operating. Because we are in Australia I cannot really offer advice in Medical Centres. I do think it is worthwhile reading the book above, another good book is by Patrick Quillin which we have started reading called Beating Cancer with nutrition. We are sure the juices helped my hubby through chemo. Thankyou very much for your kind words of support Donna, I am so sorry to hear of your loss.Did your husband have a whipple's aswell? What chemo did they try. I am sorry if this makes you too upset to remember it all. The oncologist did tell us that duodenal cancer is very rare but she has seen it in a number of HNPCC syndrome patients. Because this cancer is so rare she used a colon cancer protocol. SHe said that colon cancers are mostly adenocarcinoma's which is what his was and that it was part of the small colon rather than treating it like a stomach cancer which would be different again. My hubby had 6 mths irinotecan, 5fu and leucovorin intravenously every fortnight with a 49hr 5fu infusion that he would take home. I think its called the folfiri regimin Sorry once again for taking so long to reply You are all in our prayers Belinda Belinda1 Wed, 24 Aug 2005 00:00:00 GMT Lisa: I am so sorry to hear about your brother. Please don't give up! There is a website - usnews.com - where you can find a listing of cancer hospitals. There is one at the University of Alabama in Birmingham. I suggest you contact at least one, as they will know the latest treatments for this cancer. I was diagnosed last year at the age of 46. I had a resection and then chemo (5FU which is a colon cancer regimen) and I have been cancer free since then. Mine was stage 4, as it was in a lymph node in my neck; but that went away with the chemo. My surgeon was Dr. Fischer at Hermann Hospital in Houston. He was recommended by my GI dr. I tried to get in to MD Anderson, but I started the process too late and decided to do something different. I had also contacted Sloan-Kettering in New York and got a very quick response from them. There is a Yahoo group that you can join and read some interesting info. on treatments that other people have gotten. It's a health group titled Duodenal Cancer that you can find on yahoo.com. There is also another website - rare-cancer.org - it has info. and a forum. I wish you luck, and please write and update us on your brother's progress. Janet Janetl Sun, 21 Aug 2005 00:00:00 GMT My brother (45) was diagnosed with stage 4 duodenal cancer last week. We live in Alabama, and they say there is no cure or help for him here. They have suggested chemo, which is experimental, because the cancer is so rare. If you have treated for this with good results, please let me know where and by who. We are desperate. Lisabham Sun, 21 Aug 2005 00:00:00 GMT Hi Belinda: I'm sorry to hear about your husband. My husband was diagnosed with the same cancer in January, 2004. He had stomach surgery and underwent a series of chemotherapy treatments. On June 24, 2004 he passed away. It has been very hard on the family but God has given us the strength we need. He did not have a lot of pain but was very weak. The doctors said it was a very rare type of cancer. I will be praying for you that your husband gets through all of this. My prayers are with you. Donna Grandaughter Tue, 16 Aug 2005 00:00:00 GMT Hi Janet, I'm glad you're doing so well. Thanks for the info. My Dad is not having chemo because the MD said there are no studies that prove the chemo would be beneficial. He said if he were a young person they would do it even though the evidence did not show a benefit because the evidence also did not show that it did not help. He has a pacemaker and cardiac issues and the chemo would be far worse for him than if the cancer reoccurred at his age. They said the distal lymph nodes only had microscopic cells in them and they felt they were 99% sure they got it all. Quality of life is an issue to consider, and how rapidly it could reoccur if it did. I will check the National Cancer Institute site. The doctor treating my dad is affiliated with Sloane-Ketterling Hospital in NY. I hope you continue to have good health. Thanks, Joyce Jcseagull Tue, 02 Aug 2005 00:00:00 GMT Belinda: I have been wondering how your husband is doing? I have been praying for him and your family. I hope all is well! Blessings, Janet Janetl Tue, 02 Aug 2005 00:00:00 GMT Joyce: There is good staging info. on the National Cancer Institute website. I was a stage 4, as mine had gone to a lymph node in my neck. But now, 8 months after my chemo ended, I am doing well and there is no sign of recurrence. I hope your father is recuperating well from his Whipple. I did not have the Whipple, only a resection. I am surprised they aren't doing chemo if he had local lymph node involvement. I had 4 out of 22 that were positive and they said I needed chemo, even before it showed up in my neck. Take care and keep us posted! Janet Janetl Tue, 02 Aug 2005 00:00:00 GMT Hi Belinda, Sorry to hear about your husbancd. I hope he is doing OK. My father (85) just had a whipple's procedure. He had Colon Ca last Oct. I can't find information for staging of the disease. Do you have any good web sites for this? They claim he will not need chemo or radiation for follow-up. He did have local lymph node involvement. I'd appreciate any info you might have. Joyce Jcseagull Thu, 28 Jul 2005 00:00:00 GMT Hello Nancy, we are sorry to hear about your mother.Sorry it has taken us a while to respond. Have the dr's staged your mother yet? We are thinking of you all.Please let us know what the drs have said re. staging, we are here to help kind regards Belinda Belinda1 Tue, 19 Jul 2005 00:00:00 GMT Belinda, My mother has just been diagnosed with this as well and is still at the evaluation stage. We go for more testing this coming Tuesday. I too am interested in finding information on this cancer. They have apparantly made great strides in recent years with this based on what I have seen in my research here on the web. In the 1980's there was a very small percentage of patients who survived this but I'm finding posts from people now who are several year survivors. As a breast cancer survivor (5 years) I know the importance of knowledge in waging your battle against cancer and it is frustrating to find so little on this particular cancer. I would appreciate any information you can forward or find on it. I hope your husband is improving and will say a prayer for him. Nancy Nancy8251 Fri, 15 Jul 2005 00:00:00 GMT Belinda: It was good to hear back from you - like you said, this is such a rare cancer that it really helps to talk to others who have experienced it. My symptoms were intermittent stomach pain and anemia. The first test I had was a CT scan and it didn't show anything, and neither did all of the other tests. What a coincidence - I ended up in the ER 2 years before I was diagnosed and the dr. there said I had an ulcer!! I guess because my pain was not really severe and I would only have pain every few months, the dr.'s weren't too concerned. I had another dr. who thought it was my gallbladder and heavy periods. But my anemia got very bad (hemoglobin was 7)and that finally got their attention. The capsule endoscopy is where you swallow a camera in a pill and it takes pictures of your diegestive tract. The regular endoscopy did not reach the part of the intestine where my cancer was. I had a tumor the size of an egg which was ulcerated. At first they said I had no tumor markers, but now my oncologist said that my CEA has been very low and looking back 2 years ago it was high, so she thinks they can use that as a possible predictor. I go every 3 months and all they do is check my blood for liver function, hemoglobin, white blood cell count and the CEA. The dr. said she will probably do a CT scan in Dec. It's scary because there aren't really any good tests - I had every one in the book and they still didn't find my cancer for 3 years! Because it is so rare, they don't want to check for it - I remember my dr. saying he had another patient with a tumor in her small intestine, but "it is so rare". Maybe as more people are diagnosed with this, they will check for it earlier on. My dr. said the best thing going forward is just to be aware of your body and symptoms or changes that you notice. I had 5FU and leucovorin. They didn't check my tumor for the HNPCC, but I will ask my dr. about that on my next visit. I thought this type of cancer was not related to colon cancer?!? Even though the chemo protcol is the same as for colon cancer, but that is because like you said, it is so rare. The oncologist was feeling my lymph nodes and found the one in my neck that was swolen, which made mine a stage 4. It went away the 2nd day after my chemo, so that was good!! They don't like to remove the nodes in your neck, because there are so many vessels and nerves in that area. My dr. checked about doing radiation, but didn't think it was a good idea. I live in Texas and had tried to get in to MD Anderson, but they only have one dr. who treats this kind of cancer and it is a first come, first serve basis, and I didn't start the process of getting in there until a month after my surgery. It was going to take another month to get in to see that dr., so I decided not to wait. My oncologist is in contact with MD Anderson and follows the same protocols - she used to work there. She did not do a PET scan on me because she said there were no benchmarks for this cancer. Instead they did several CT scans to try to determine if the cancer had spread anywhere else. My surgeon had told me that he had another female patient older than me with the same cancer and she was cancer free 3 years after her surgery. That was good to hear!! I am so grateful that mine had not spread to my liver, as that is the first place it usually goes. The surgeon even did a sonogram of my liver during my surgery to make sure. I was very blessed, actually, since I had the tumor for so long. And you are blessed to have Mia Grace - I know she must be such a comfort to you during this time! I think it is so much harder on the spouse, because they feel so helpless. My husband was wonderful during my ordeal, and I have a 12 year old son. I was scared at first because he was the same age I was when my mother died of lung cancer (she was a smoker). But God has been so good and carried me through this. I try not to think about it coming back, but it is hard! I have been reading on the internet about some natural supplements people take - I may try some. There is a website www.plwc.com that has some links. It sounds like you live in the U.K. - I have a good friend who lives in Aberdeen! She was my neighbor in Houston for several years. I had better let you go - please write back when you have time and don't worry about asking questions - I don't mind answering them! Blessings, Janet Janetl Wed, 22 Jun 2005 00:00:00 GMT Hi Janet, Thank you so much for responding. Congratulations on getting through the op. and chemo and for being cancer free. Even though you didnt have to have a whipple it takes a while to get to that part of the body! My husband, Reini (34yrs) has just finished 6 months worth of chemo today. Am very interested in what other adjuvant chemo treatments duodenal cancer patients have had since it is so rare. Reini was diagnosed on 5 NOv 2004, you said you had symptoms for 3 years, I am sorry that they did not pick it up earlier what were your symptoms? reini had hunger pains)for about 6 months after a bout of food poisoning, they thought it was an ulcer and had taken ulcer tablets that had stopped the pain for a few months then it would come back, when they finally did an endoscopy they thought he had an ulcer, the gastroenterologist actually congratulated him on the second largest ulcer he had seen and sent him home with ulcer tablets. Luckily the doc took a biopsy because of the size and called him back a few days later to do a ct scan ( which didnt show anything) also his blood tests did not show any tumour markers like CEA or CA19. Was your cancer detected in any tumour markers in your blood? 6 weeks to the day that we had our first baby, Mia Grace, reini had his whipples an epic 10hr operation. Reini had 6 weeks to recover from the op. (he was in hosp for 15 days, intensive care for 4days, his lung collapsed due to the pain he was in, lost about 12 kg) Every fortnight from jan 17th till this week he has had chemo 5fu irinotecan (cpt11) and leucovorin. The protocol he had is called Folfiri It is prescribed usually for metastatic colorectal cancer. THe oncologist said that there was no protocol for this type of cancer because of its rarity. Its good that your chemo didnt knock you about too much. What chemotherapy did you have? The chemo would knock reini around for the first week, he would get his appetite back every g ood week of the fortnight and would exercise , meditate and drink fruit and veg juices to give him more energy. The oncologist did a test on the tumour and found it to be microsatellite unstable ( missing the mlh1 gene) with his age and the unstable tumour they believe he has HNPCC (heriditry non polyposis colorectal cancer) although he has no known cancer in his family. I was wondering whether the doctors tested your tumour for this?. they have said that this syndrome predisposes you to other large colon cancers so he will have to have a colonoscopy annually. It is good to hear that you are going well. how did they find the affected lymph node in your neck after the operation? Did they operate to take it out or did it go away with the chemo? Reini also had a PET scan before the operation because they couldnt really see it in the ct scan, the pet scan showed one hot spot where the tumour was but not the lymph nodes that were affected they guess it was hidden behind the tumour. It is fantastic that you are cancer free ,How often do you have check ups now? They have booked reini in for another pet scan in november along with a ct scan and colonoscopy and endoscopy. I am so sorry I have talked my head off to you and have thrown so many questions at you. You are the first person we have found that had duodenal adenocarcinoma, we are so glad to hear from you. GOd bless, you are in our prayers too, our faith has also got us through Hope to hear from you soon Belinda, Reini and Mia Grace Belinda1 Wed, 22 Jun 2005 00:00:00 GMT Belinda: I was diagnosed with duodenal adenocarcinoma one year ago at the age of 46 and fortunately I did not have to have the whipple, just a resection. They removed 22 lymph nodes and 4 were cancerous. I had symptoms for 3 years before I was finally diagnosed with a capsule endoscopy. I had chemo for 4 months and tolerated it pretty well. Since then, I have been cancer free, and I was stage 4, as the cancer had traveled to the lymph node in my neck after my surgery. I have not found much info. on this type of cancer, either, so I am glad to hear from someone else who has experienced it. Although, I am sorry that your husband had to go through the whipple - I know that is rough!! Is he going to have chemo? I will pray for your husband - my faith has been my salvation!! Janet L. Janetl Tue, 21 Jun 2005 00:00:00 GMT Is there anyone out there who has been diagnosed or knows someone who has been diagnosed with Duodenal adenocarcinoma? My husband was diagnosed ( Age 34) he had a whipples resection where thay removed his duodenum, head of pancreas and base of stomach and 16 lymph nodes 4 were cancerous. We have been told that this cancer is very rare. We cannot seem to find very much information on this cancer. It would be wonderful to hear from someone who knows something about this disease. Regards Belinda Belinda1 Fri, 17 Jun 2005 00:00:00 GMT