Ampullary Cancer...survival rate?

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RE: Ampullary Cancer...survival rate?

by Clund on Sun Oct 25, 2015 06:22 PM

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How far out are you? How was chemo? Radiation?  We just finished first round of chemo (5fu plus oxiliplatin) He wore a pump for 2 days. Now not feeling good at all.  Is 30% a real number? Or a guess.  He has no other health issues at all and prior to diagnosis fit and active. Is only 54. Any idea what can possitivly impact progress thru the treatment?

RE: Ampullary Cancer...survival rate?

by Whippleschmiple on Mon Oct 26, 2015 06:22 AM

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I had a NCI AND MGH (Mass General) opinions. You need to take the numbers with a grain of salt because as the NCI Center pointed out to me all over five years ago the data is old. He guessed that I was at 85% rate but Mass General said 50 to 60% and online the details out there about perineural invasion & other of my risk factors said it wouldn't look like less than 20% and I'm now at the Cure point. But I also did not only conventional radiation chemo and the Whipple but I changed my diet made sure I follow certain lifestyle changes and since mine was intestinal-type I followed what people might do to decease recurrence with colon cancer. There's been data to show major exercise helps, there's been some studies to do with these cancers and mushroom extract helping tolerate chemo and making it work better, and I gave up meat Dairy & sugar but I eat plenty and there are alternatives. I followed a lot of the ideas in Doctor Servan-Schreibers anticancer diet.

I think the 30% came from a print out that Mass General had given me that was data for patients from 1988 to 2000 by a large group in this is one of the biggest studies over 4,000 patients but they were all different tissue types of ampullary they were not apples and apples as its made up of many different types and they were treatments from all over the world some better than others the quality of the Whipple would have varied a lot and back in the 80s people didn't do well with the Whipple so the 30% is probably not accurate. These need to be treated aggressively in really competent hands and the chemo needs to fit the tissue type and I believe that if people believe they're going to make it there far more likely to do so and I don't know if it's because the immune system is affected. 

RE: Ampullary Cancer...survival rate?

by Rlopez on Mon Nov 02, 2015 11:04 PM

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Hello Mr. Fitz , I was diagnosed with ampullary cancer last year 5/5/2014 and after many test Whipple surgery was schedule on 6/6/14 at Kaiser Hospital in Panorama City Ca . My cancer was diagnose as a stage 1 , I stay in the hospital for 15 days , my surgeon was Dr Rupp who is a Whipple type surgery specialist out of City of Hope , San Dimas Ca . She explain the procedure to my wife and I and that it would be a 5 hour procedure , they remove the gall bladder , 50 % of the pancreas , stomach and Liver were okay , she created another Bio-Duct with an intestine , amazing . Which chemo therapy was schedule to began September 2014 which is a 6 month program of Gemcitabine (Gemzar) , which is the mildness type of chemo a 30 minute procedure . I was done on December 2014 , all was good until in September 2015 another mass was detected via a CT Scans which require another chemo treatment . I hope all goes good for your father . Yes I would be lying if I said no worries but we know anytime cancer is the program , worry is always going to be in our mine , God Bless everyone ,,, Mr . Lopez

RE: Ampullary Cancer...survival rate?

by Clund on Tue Nov 03, 2015 01:50 PM

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I am seeing that there are different drugs for ampullary cancer. I also understand that there can be something like 3 different types of ampullary cancer. Pancreatic, Duodenal and Billiary. 

I think they each are different in terms of type of drug.Does anyone have any direct experience with duodenal type? Stage 2b>

RE: Ampullary Cancer...survival rate?

by Whippleschmiple on Wed Nov 04, 2015 03:13 AM

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I had intestinal-type, what you are referring to probably, not to be confused with non- ampullary duodenal small intestine cancer which is even rarer than ampullary.It is believed to have a better cure rate. It behaves more like the tissue type that said most of the data on ampullary cancer is them as a group and is usually really old and not real accurate. Chemo should be specified to the tissue type. So I tried to look at statistics in articles about how to prevent reoccurrences of colon cancer as I figured maybe it was an analogy. My father ended up dying of colon cancer.  Exercise has been researched as reducing recurrences a lot of colon cancer, meat is implicated now in a number of intestinal cancers, and I had read about certain tyrosine rich foods - google it. I personally think all intestinal cancers are probably affected by diet and I think that inflammatory conditions probably proceed them for a lot of years in a lot of cases not all and I do believe if you're missing part of the pancreas that we have to change fat intake dairy intake and sugar intake and I do not think liquor as a good thing either because it affects the liver same thing with a lot of medications. Just my opinion.

RE: Ampullary Cancer...survival rate?

by number1dad on Thu Jan 19, 2017 11:55 PM

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On Sep 25, 2010 9:28 PM MrsFitz wrote:

My dad had a mass that needed to be removed at the bottom part of his bile duct.  The whipple procedure was done on Wednesday (sept.22).  The doctor's say the surgery went good and my dad is doing great (even though dad don't think so...)  We were told today that it was confirmed that he tested positive for Ampullary cancer and 2 of the 10 lymph nodes came back positive for cancer.  The doctor is giving my dad a month or two to recover from the surgery then off to the cancer doc we go to discuss chemo or whatever will need to be done.....Can anyone tell me how long the survival rate is?  Or what my family and I can expect next?  Best options?  Anyone been through this that can tell me about your experience....just feeling lost...my dad went from a big tough guy to a guy that can hardly get out of bed....

Hello Mrs. Fitz. I just joined today and came across your post.

My father too has same type of cancer. I know it has been 7 years since your post. Hopefully you can respond to me regarding the survival rate. Thank you. Lina

RE: Ampullary Cancer...survival rate?

by Turk183 on Tue May 30, 2017 04:08 PM

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I was recently diagnosed with cancer of the ampulla of vader. I also have a hereditary disease call Familial Adennomatous Polyposis or FAP for short. A little background on my condition. FAP causes adenomas polylps to form in the digestive track, mostly in the colon but also in the stomach and duodenum. I had my colon removed in 1983 and my gallbladder and a golfball sized tumor removed from my duodenum in 2004 and have had semi soft stools ever since. My condition has progressed to hundreds of polylps in my stomach, I also have a dozen or so in my rectum yearly. In 2013 I was diagnosed with Atrial Fibrillation of the heart, a manageable condition. In 2016 I was diagnosed with Graves Disease, Cirrhosis of the Liver due to prescription medications and fatty liver and my pancreas not working all that good, I'm now on Zenpep for enzymes replacement. Whenever I eat anything now, my pancreas acts up and I suffer from pancreatitis. I have had chronic nausea for 16 years now for which I take medication. My Kidneys work at a 50 percent output. In March I had a tumor the size of a lemon removed from my duodenum that was blocking the ampulla, causing me to have jaundice and pancreatitis. Now after all that, my thyroid has to come out because the medication the endocrinalogist put me on effects the liver so I can't take medication for my hyperthyroidism. My diarrhea has been constant since August, going to the bathroom sometimes hourly or more. My PCP has urged me to retire on disability at the ripe out age of 56, but I feel like I can go on for a little while longer. I have decided not to have the Whipple surgery as my mother had that in 1977 from which she never fully recovered, she passed in 1979. I have two sisters who have FAP and have ileostomy's and systoms like me. I have not been offered any surgery options yet as the gastroenterologist wants to take more biopsies to see if the cancer has spread to the surrounding tissues. I have been fighting with this disease for 40 years and quite frankly, I am tired. It is interesting to know that the Whipple surgery causes more diarrhrea as I know I could not stand that. I have looked online for possible surgery's for this type of cancer and a Local Resection have been an option, along with chemo and radiation. I have a very supportive wife and she supports my decision for treatment. 


RE: Ampullary Cancer...survival rate?

by Whippleschmiple on Sun Jun 25, 2017 11:11 PM

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Generally speaking there are 2 types of whipple

Classic whipple-also removes pyloric (stomach junction) valve so part of the stomach

pylorus-preserving pancreaticoduodectomy (sp?) pylorus preserving whipple-- stomach remains intact (PPPD).

Not all docs do the PPPD but I had that type and rarely like anyone else have diarrhea and maintain normal weight.   There is an increased risk gastric ulcer, have not had that.  There is an increased risk SIBO, treated fine maybe 2x from that infection.  A good GI doc is of help and if do a whipple need a surgeon and facility that do very large amounts of them.  I dont have FAP but question was raised if AFAP, much lesser version, may be in family.  I am nearly 7 years since my whipple and doing well.  At 60, I work, exercise daily.  Have some unrelated endocrine issues.   I eat well but chose to give up meat, dairy as hard to digest and some meats and, or how cooked associated with some GI cancers.  I follow some dietary ideas from anticancer diet by dr. servan-schreiber which is largely alkaline based and may reduce inflammation.  Ask docs about using milk thistle for your liver, it is given to hepatitis patients as an example.  I take daily as early in illness I had elevated liver enzyme levels which are fine now since whipple.  Atrial fib runs in my family... limit caffeine and probably need blood thinners... If on enzymes presume you are on proton pump inhibators.  I take aloe vera gel sometimes, and probiotics of lactobacilus and bacillus strains daily.  I exercise daily which keeps me healthier than not.  Can diarrhea be partly related to meds?  I have my ileum, but had duodenum and part of jejunum removed along with 40% of pancreas and bile duct.  I am not diabetic.  Sometimes ampullectomy done if not cancerous or well-differentiated stage 1A.  I was 1B ampullary adenocarcinoma, with aggressive features so whipple was way to go.  Good luck.   

RE: Ampullary Cancer-intestinal type, Whipple, Xeloda

by cynthiawaguespa on Wed Jun 05, 2019 01:24 AM

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I had ampullary cancer..  Duct of Vater.  one out of 39 lymph nodes affected.  Had gemzar chemo.  Declined radiation since there was no tumor to radiate.  Went two and 1/2 yeas, doing ok, though Whipple is a you know what to get over.  Had a hernia from the whipple, it was fixed about a year later.  Pain still a problem from that.  Latest scan in August 2019... nothings...YAY.  Next scan Nov 2019.... has spread to the lung as metasized ampulary adrdencarcoma ... so is stage IV and incurable.  Mabey, at most a year survival.  So you do from making plans... to getiing ready for Hospice in two shakes of a lamb's tale.  Take your "hope" and stick it where is belongs.  You'll be dead in less that 5 years.

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