Help Selecting Treatment For Stage 3 Duodenal Cancer

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

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.

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

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

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

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

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. 

Hi Tammy

My 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, 

Regards

Meg 

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 

 

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