Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,51419,0.htm Sun, 19 May 2013 00:00:00 GMT Sun, 19 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I also had radiation with chemo plus the chemo after.  I seriously think we should look at what may cause these in the first place and I think diet and ongoing digestive issues play a role.  i chose to give up red meat but if had it would have natural, I rarely have poultry mostly have seafood, shrimp and other seafood or soy type foods for protein. I don't drink milk but have alternatives like coconut milk, soy milk, almond milk, rice milk and have alternative cheeses and frozen treats.  I tried to follow suggestions in anticancer book by dr. servan schrieber.  I use garlic clove, onion family in cooking, greens like kale and bok choy, broccoli, fruits--berries good, I filter my water, drink 3+ cups green tea a day, etc.  A Dr. Fuhrman also has his thoughts.  I used to take turmeric and pepper and am going back to it (found it in real form too).  I "try" to get dirty dozen fruits and vegies organic and clean fifteen I worry less about.  Do some research on foods viewed as anticancer.  They can only  help.  I also exercise daily as that reduces risk of some cancer recurrences especially colon cancer types.  Research what may reduce risk of intestinal cancers like colon cancer, more research on that. Whippleschmiple Sun, 19 May 2013 00:00:00 GMT So my mother is getting her last infusion of Gem/Cis chemo today for ampullary cancer, stage 2-B, that was removed in October with clean margins, no perineural invasion but 3 out 27 nodes testing positive. She will get an MRI on June 10 to make sure nothing else has popped up. Obviously I would love if my mother never had any cancer issues ever again (she's 64 and both her mother and grandmother lived well into their 90s) but I realize recurrence is a major issue. I guess my real hope right now is just that at least in this round, they don't find anything on the scan and my mom can at least have 6 months of normalcy until the next scan, and then we have to take it from there I guess. Basically I'm just really worried about what might happen if they found something somewhere else or basically any scenario where she'd need more treatment because a) it's obviously not a good sign and b) I just feel like she's really been strong through this but is worn out now and just needs a break and some time to live without thinking about cancer. Like I said, I hope in 10 years we still haven't ever had to do anything related to cancer, but right now all I'm hoping for is to start with a few months where she can put these thoughts to the side. Does that make sense? eal2727 Mon, 13 May 2013 00:00:00 GMT It is critical to very seriously consider extra treatment!  I was diagnosed and treated nearly 3 years ago (with chemo and radiation) and too many even with early stages get recurrences and sometimes even with treatment.   I was T2, clean margins, no nodes, but had perineural invasion and lymphatic invasion and mine was intestinal and either poorly differentiated or moderately to poorly diff.  The only patients that may not need more treatment are not just stage 1(I was 1B) and have it well differentiated and no high risk features (no perineural, no lymphatic invasions which may be types of paths to spread too).  If intestinal type use one class drugs, if pancreatic then another class and within 2 mos, maybe 2 1/2 ish mos. sometimes 3 mo. cutoff for radiation after whipple.    Whippleschmiple Fri, 03 May 2013 00:00:00 GMT Hi, Since my last post, I am happy to report that my husband is now able to eat whatever he wants without any issues.  He still continues to tire easily.  We are trying to find out if he will need chemo or not.  The oncologist we saw says that ampullary cancer is not common therefore there is not a lot of research on it.  Some doctors suggest chemo and other do not.  Being that his cancer is T2 clear marginins and no lymph nodes affected, we are at a loss as to what to do  Next week, we will try and get other opinions.  You never know cancer is nothing to be playing with.  Did you get chemo or and radiation? what stage cancer did you have and was it ampullary? of what origin was it, billiary or intestinal?  I would appreciate any imput ,  Thanks,  Maria Marcan6 Thu, 02 May 2013 00:00:00 GMT I am fortunate that in 3 months I will be three years out but I remember some of the early issues.  I was also T2, and unless well differentiated and no high risk features most need additional radiation and chemo after a bit of surgery recovery to increase odds stay clean.  I had perineural and lymphatic invasion but clean nodes,...   I used and still use probiotics daily.  I needed enzymes and omeprazole at that point daily and later weaned slowly off but many need them indefinitely.  I remember days of healthier small frequent meals, shortly after surgery taking greek yogurt, organic yogurt, little or no dairy and avoiding meat---hard to digest etc., and I ate healthier versions of tasty graham type crackers.  I still avoid dairy and use coconut milk, almond milk, soy milk, and sometimes rice milk for alternative milks, alternative yogurts, alternative fake ice creams and cheeses.  I eat more fish, shrimp, scallops and occasionally poultry but don't eat meat.  I worry about causative affect and I added over time a lot of so called anti-cancer type foods from onion family to garlic cloves etc.  Drs. Fuhrman and Servan-Schreiber wrote of similar greens, berries, some mushrooms etc.  I feel exercise from studies reduces risk recurrence too.  He needs to over time make sure his diet (if tolerable) helps him go to the bathroom so he is not constipated or opposite.  I maintain a high fiber diet.  He will figure out foods he tolerates best but many of us for months or years find dairy a problem, and I found so many delicious alternatives in both regular and health food store.  Try rice pasta or rice with vegie pasta and some greens and carrots.  A staple when my stomach is upset is real oatmeal and bananas.  I know another whipple patient who needed that a lot.  If my stomach acts up now, I go back to oatmeal.  I also use aloe vera gel at times. Whippleschmiple Tue, 09 Apr 2013 00:00:00 GMT My husband underwent a whipple for ampullary cancer T2 on March 26 of this year.  Surgery went as expected and his total hospital stay was 5 days.  After a week, Dr. told him he could eat anything he wanted and when he did, he felt awful.  I know his digestive system is not the same as it was before surgery, he eats soft foods but I don't think they are nutritious, does not like protein drinks.  I could use some suggestions for meals that could be nutritious as well as tasty. I need to build his strenght before he starts chemo. Marcan6 Mon, 08 Apr 2013 00:00:00 GMT You are responding to a very old post, I knew Ray and family.  His health was affected by other drugs, massive doses of D.  I do not agree that minor side effects of xeloda warrant stopping it, using ice chips if on other forms of 5FU will reduce sores in mouth and some people will get nausea from related chemos.  I was on Xeloda for 6 months and had to reduce dose but stayed on it entire time.  I actually had to alter days on/off on oncologists advice.  I would discuss any chemo issues with oncologist and call his/her nurse asap if a big concern but not stop over nausea or mouth sores.  I had occasionally bad but TEMPORARY hand/foot syndrome, some b vitamins and maybe l-glutamine may help, cushioned shoes, putting up feet, using skin balm and socks/gloves on hands/feet at night.  The skin if bad enough may require a doc to alter dosing, but one article said those with it responded more to drug and my hands and feet FULLY recovered.  Even to point that I was working on my feet since then.  It is up to a doc to decide what is an emergency, never hesitate to call and ask.  I only ended up in ER when dosing made me dehydrated one time and I am more prone to that due to other health issues.  The drug combined with 5 1/2 weeks radiation post whipple probably saved my life so I have a different take on it.  Ray had developed extreme digestive issues, and in his very, very rare case he was given it nonstop for many months.  Typically it is two weeks on, one week off as each cycle and that and dose can be modified if needed.  Also, my two cents is during radiation probably need omeprazole/prilosec, and maybe during chemo, especially on enzymes.  I was able to wean off both, but after chemo was done, I had to very slowly wean off omeprazole or had side-effects.  I literally emptied capsule slightly over time.  Again, if carefully followed these meds can help many.  If someone has more advanced ampullary, if intestinal, oxaliplatin and maybe other drugs needed too.   Whippleschmiple Sat, 05 Jan 2013 00:00:00 GMT On Nov 25, 2010 11:56 PM RayLogu wrote: Take it easy with the Xeloda, the warning to stop with side effects needs to be taken very seriously.  I didn't wait for multiple occurances a day to stop, if I had one occassion of nausea or diharrea I stopped immediately.  Many days I was only able to take the morning dose and skipped the evening dose.  in the conculsion of the 6 weeks of xeloda and concurrent radiation I took 70% of the xeloda and had toxcicity from the xeloda.  my system could not clear it out as fast as a younger person (i-m 77)  anyhow, I can only hope that the toxcicity gave the added whallop needed to knock out any microscopic cancer cells. The oncologist originally told me I wouled be on a maintenance low dose of xeloda after the 6 weeks, but did not recommend due to the toxcicity.  If yours was caught early and the surgeon feels he got everything, you should do fine.  I too was in good health prior to surgery and not had any other surgeries or illness/health problems.  Fortunate 6 months post op I am feeling VERY good and have no pain, my only complaint is gas, but do take probiotics recommended by doc and it does give some relief. But gas is good, means nothing is blocked.   Relax, enjoy life and read all you can online about this dreadful disease... it is so very Rare...  interesting that you are from NH, I grew up in Laconia, leaving in the mid 70's and now live in North Carolina.  Wonder if there was something in the water in NH?? that may have contributed to this cancer?   My best to you, Regards, Ray        you are right.  pay very close watch about side effects.  Anything unusual such as a sore starting in the mouth, stop taking Xeloda and go to the emergency room, JMPRR550 Sat, 05 Jan 2013 00:00:00 GMT It seems data says typically if none in lymph nodes, if not in pancreas, patient may not get chemo (some may be offered it if other high risk features like I did).  Some data states if well-differentiated, if no nodes, clean margins and stage 1 then maybe nothing more needed.  Have some with earliest stages had recurrences, and some even with chemo and radiation, yes which is why if not the earliest and least aggressive, probably most patients should do more.  Usually the longer we are clean, the less odds recurrence but there are rare exceptions to that, and most patients seem to get recurrences by year one, 1 1/2....  Many followed 2X a year and with CA 19-9 values IF and only if they were elevated prior whipple and went down after.  The data on cure rates at stages is ancient and one doc gave me study of about 5500 patients some going back 30 years and showed even stage 0 and 1 had too high recurrence rate and yes survival rate better if earlier stage but how aggressive, how much treatment do matter.  The highest cure rate is for the rare well-differentiated, stage 1, no nodes, no any risk features.   I had stage 1B, no nodes, not in pancreas but it was not well-diff which would be less aggressive and I had perineural invasion and lymphatic invasion (trying to get to nodes), so I did more treatment.  I feel all patients that are told no chemo and radiation need a second top opinion and there is about a 2 month, maybe up to 3 mo. window to start radiation if after whipple.   Assume if your dad follows check ups and had top care he will be okay but I personally changed my eating habits and lifestyle habits to reduce risk of recurrence.  Also whether pancreatic tissue type or intestinal tissue type will affect odds of recurrence.  There are many factors on pathology report from surgery and even amount of clean margins may be issue for some if tiny margin.  I even feel if we think we will survive we are more likely too, maybe the immune system at work, and studies show support groups increase survival in some cancers so attitude as factor.  I had two different docs give me two very different survival rates, and remember a number is just a number.  He should exercise, consider eat low or no meat, minimize or don't eat dairy/animal protein,.... higher veggie content diet.  Do research on anti-cancer diet. Whippleschmiple Tue, 11 Dec 2012 00:00:00 GMT On Oct 03, 2012 1:23 AM clcampbell wrote: There are some of facebook groups, that are for whipple surviors and for those of us going through the whipple. send a friend request to carylinda campbell and I will get the info to you.  I have just found them and what a difference when talking to alot of folks, I think you will find a answer there. CaryMy dad is 7 months after Whipple, and doing great. He did not have chemo/radiation and it was localized Ampullary Cancer say doctors. No chemo/radiation is opinion when there is no Lymph involvment and no metastases. What else is factor for not doing chemo? Is it encouraging because he didnt have it. Some opinions pls ?? Closely   states and survivals of people with 1, 1A,1B, 2A , 2B with no chemo/radiation ? saviolaaa Tue, 11 Dec 2012 00:00:00 GMT There are some of facebook groups, that are for whipple surviors and for those of us going through the whipple. send a friend request to carylinda campbell and I will get the info to you.  I have just found them and what a difference when talking to alot of folks, I think you will find a answer there. Cary clcampbell Wed, 03 Oct 2012 00:00:00 GMT So I looked again, and it's still not clear to me if it's intestinal or pancreatic. I think it's maybe mixed, but it didn't really appear to be anywhere in the pathology report. Was it possible they didn't include that? To anyone reading this, is anywhere aware of clinical trials aimed at preventing recurrence in periampullary cancer? I want to scrap together every single shred of information I can to battle this with my mom, so please, anyone with ANY info, let me know. eal2727 Tue, 02 Oct 2012 00:00:00 GMT On Sep 30, 2012 1:18 AM Whippleschmiple wrote: was it intestinal or pancreatic tissue type of ampullary?  which chemo are the aiming for or which mix?  pancreatic tissue usually one type, intestinal different types.  any talk of radiation too?I have to look at the pathology report again, because it wasn't clear to me the first time if it's intestinal or pancreatic tissue. I think it might be pancreatic, which I know is bad. She has no perineural involvement and what they called "superficial" invasion to the pancreas. Her meeting with the oncologist is next week, so we'll know more about what kind of chemo and whether radiation is recommended or not at that point. I guess I'm just worried because some of her prognostic factors aren't great. I don't want to get down because it won't do any good, especially for my mom. But I am worried. She is Stage IIB, and if there are 3+ year survivors with similar stories, I'd love to hear them. eal2727 Mon, 01 Oct 2012 00:00:00 GMT was it intestinal or pancreatic tissue type of ampullary?  which chemo are the aiming for or which mix?  pancreatic tissue usually one type, intestinal different types.  any talk of radiation too? Whippleschmiple Sun, 30 Sep 2012 00:00:00 GMT Also, can anyone talk about the experience they had with chemo? I've heard a lot of different things about how tough it is. Some people seem to be hit really hard, others seem to have very minor issues. I guess everyone's body reacts differently, just wondering what happened with any of you guys so I can know what to expect with mom. eal2727 Fri, 28 Sep 2012 00:00:00 GMT So, pathology report back for my mom today. Not the best news, not the worst. They couldn't guarantee us that it was ampullary cancer and not pancreatic until today, but they have now confirmed it is ampullary. Also, the margins were negative and the tumor was a little smaller than they had thought originally. The bad news is they took 27 nodes and three were positive for microscopic levels of cancer. I believe it's also moderately to poorly differentiated, so some high-risk features and considered Stage 3 because of nodes (although based on size it would have been 2). So chemo starts now in about six weeks, scans every 6 months, etc. I'm worried, but I know there is hope because we have the best care and it's not pancreatic. Anyone here with Stage 3 that has done well? Looking for encouragement :) eal2727 Wed, 26 Sep 2012 00:00:00 GMT So, pathology report back for my mom today. Not the best news, not the worst. They couldn't guarantee us that it was ampullary cancer and not pancreatic until today, but they have now confirmed it is ampullary. Also, the margins were negative and the tumor was a little smaller than they had thought originally. The bad news is they took 27 nodes and three were positive for microscopic levels of cancer. I believe it's also moderately to poorly differentiated, so some high-risk features and considered Stage 3 because of nodes (although based on size it would have been 2). So chemo starts now in about six weeks, scans every 6 months, etc. I'm worried, but I know there is hope because we have the best care and it's not pancreatic. Anyone here with Stage 3 that has done well? Looking for encouragement :) eal2727 Wed, 26 Sep 2012 00:00:00 GMT My two cents is unless the report says intestinal tissue type, stage 1A, well-differentiated, 0 positive nodes, NOT in pancreas at all, large clean margin, negative for perineural and lymphatic invasion, most of us should VERY seriously consider if offered radiation and chemo, and if no nodes  When any high risk features at all usually more is better, but if still very early stage sometimes less toxic chemos.  If almost a picture like above maybe only chemo offered.  My first tumor board voted against more treatment (stage 1B with a few high risk feature though 0 positive nodes and not in pancreas), though my second opinion said do it, so I did the extra treatment.   First get the report, then she should ideally get a second top opinion (can even do second reading of slides) quickly.  There is very little protocal on how to treat this rare cancer and for some time they claimed no benefit from extra treatment but I found though some who had extra treatment didn't do well, all or almost all I knew that did really well DID do it.  Now some studies admit benefit, especially in those with positive nodes (again I did not have them).  First hurdle is past, take a deep breath.  Have her walking around more not less and standing slowly tall/straight as she gets up.  Have her eating frequent small meals, taking a good probiotic,... Good luck! Whippleschmiple Mon, 24 Sep 2012 00:00:00 GMT Thanks everyone for your support. My mom is coming home today, a week after surgery. The first 36 hours after surgery were a little rough with low blood pressure and some pain, but things did almost a 180 from that point on and she started to make great strides. Ate real food for the first time yesterday and is walking around the hospital floor like a champ, so they are sending her home, which she is understandably thrilled about, as am I! The only thing that still has me worried is the pathology report, which we might not get until Wednesday now. My mom will be seeing the surgeon for an appointment that day. I know I can't control what it says, and that even if the news isn't fantastic, it doesn't mean she can't live a long and full life from this point on. I guess as much as anything I just want to know, so we can move to the next stage, no matter what that is. Obviously I hope it's Stage I or II, limited node involvement, etc. But I am SO happy to have her coming home.  eal2727 Mon, 24 Sep 2012 00:00:00 GMT  Even if there any chance it was pancreatic, sometimes ampullary will have significant recurrent rate and pancreatic stage one under some circumstances with whipple, chemo and radiation can have up to 40% cure rate and numbers are just that.  Whatever the diagnosis, the tissue type for ampullary cancer can be intestinal, pancreatic,... and some are not adenocarcinoma.  Chemo if given is based on tissue type,....  Sometimes they use term periampullary which actually is pancreatic, ampullary, duodenum, and biliary/ bile duct.  Whippleschmiple Tue, 18 Sep 2012 00:00:00 GMT Hi everyone, So my mom had the Whipple yesterday, and the surgeon came out afterwards and said it could not have gone better. No complications or anything unexpected, and he did not have to take any of the stomach out. He said there were no obvious signs of lymph node involvement, but we have to wait for biopsy to be sure. The only thing that worried me a little was that I thought he had previously said it was definitely ampullary, but yesterday he said that he still THINKS it's ampullary, and there is no reason to think otherwise. So I'm a little worried that means there's still a chance it could be pancreatic in origin. Anyway, my mom is in recovery and doing well so far, and she'll be out in about a week, the same approximate time it takes for biopsy results. I'm hoping upon hope for either no lymph node involvement or very limited, microscopic traces. Any feedback or shared experiences would be great, as I am at work today trying not to freak out haha. eal2727 Tue, 18 Sep 2012 00:00:00 GMT when i said seemingly to do no more, i meant more treatment after whipple.  limit the statistics reading, numbers are just numbers and often very old data for ampullary, so hopefully things improving as surgery certainly has improved since early days. some data goes back 30ish years as so few of us. Whippleschmiple Sat, 15 Sep 2012 00:00:00 GMT My pre whipple CTs and ERCP implied stage 1 and it was 1B so accurate in my case.  I don't think either are great at knowing if in any nodes but some doctors are better than others at seeing shadows etc and enlargements so some may have that skill.  Read later the differentiation (well --best, then moderately, then poorly and some cancers are undifferentiated).  Whether intestinal or pancreatic tissue type is important, with intestinal more like duodenal or colon cancer and pancreatic more like its name sake BUT have seen some do well with pancreatic vs the other.  Also note whether perineural invasion or lymphatic spread even if negative nodes, note number of nodes removed and tested, these days should be give or take 12 (I had 11 removed).  Perineural is another method of spread but I had it and am over 2 years clean, I also had lymphatic and though trying to spread it didn't.  Sizable clean margins a strong idea too.  If any high risk features at all even if stage 1 or 2, safer to do more treatment like chemo and radiaiton with chemo, the type depending on tissue type.  These are agressive as a rule and the only group seemingly to do no more is with stage one, well-differentiated, very small, and negative nodes, negative margins, negative for perineural invasion and lymphatic invasion.  Also, the biopsy slides can be used by a second top facility to get a second opinion, I did that and both were top hospitals/centers.  Whippleschmiple Sat, 15 Sep 2012 00:00:00 GMT Question for anyone around: if the doctor who did the ERCP didn't seem swollen lymph nodes and nothing showed up on the CT, is that a good indication that there probably hasn't been very much local spreading? I know they have to wait to see the post-op biopsy to be sure, but is that a good sign? Did your doctors have any idea about staging or spreading before the Whipple? eal2727 Fri, 14 Sep 2012 00:00:00 GMT Just reading everybody's stories is so encouraging. I felt like I got hit in the stomach with a hammer a few days ago when I got the news, and initially we thought it was pancreatic cancer and were so crushed. Now it seems like there is hope that she will see me get married, have kids, etc. (I'm thinking of proposing to my girlfriend soon!) eal2727 Wed, 12 Sep 2012 00:00:00 GMT I was diagnosed with the same cancer in Dec. 2010 by Feb, 2011 I was in for surgery. Your mom will loose weight due to the surgery and lack of solid food. The doctors will restrict what she can pick up for a time of 18 to 24 months.  My physician got me walking as soon as possible (once out of ICU).  I did not need to chemo nor radiation.  I hope your mom does not need it either.  Be there for her.  I am 47 now, 46 at the time of the surgery.  I lost a total of 70 pounds from all of the issues regarding the cancer. But I have come back.  I am not as as big as I once was, but that is okay too.  I went back to work 2.5 months after the surgery.   I am a safety manager so I could work around the surgical and restricted issues.  To this day I am fine still no cancer. YEA. Please feel free to contact any of us for help when it comes to your mom and her recovery.  We all have different avenues of recovery, we are a limited bunch of folks due to the rarness of the cancer, but we are all surviors and go getters, just like your Mom will  be. Keep your mom and you focused on the path of recovery and before you know it time will be going by and the time spent will be priceless.   Good Luck,   Cary Campbell Beaumont, Texas clcampbell Wed, 12 Sep 2012 00:00:00 GMT Hi all, My mother was diagnosed with an ampullary tumor just this week and was lucky enough to schedule a Whipple for this coming Monday at Columbia Pres in NYC. The doctor, John Chabot, is supposed to be the best in the city, and he was really encouraging and upbeat with my mom. I think she was under the impression she had pancreatic cancer and was expecting the worst possible news, and luckily that's not what she got. Still, it's very, very scary obviously. My mom is 63 and in otherwise great health. She's always eatem well and exercised steadily. They have told her to expect 6 months of chemo after the surgery and that if she doesn't need it, she should be pleasantly surprised. It's been a crazy ride these last few days, from hoping it was gallstones, to thinking it might be pancreatic, to finally learning it was this very rare form that gives us a little more hope. I'm just wondering what I should expect in the days immediately after the surgery, and also, what kinds of things were helpful in the first weeks of recovery. Also, I'm trying to understand about lymph node involvement, etc. I take it that often at least a few are involved, but the fewer the better? The doctor who did the ERCP said he saw no swelling and the CT didn't show anything anywhere else on her body, but I know the real key is the surgical biopsy. eal2727 Wed, 12 Sep 2012 00:00:00 GMT Research HIPEC I think it is for some types of abdominal recurrences or maybe even primaries.  It is a way of infusion chemo inside the body for tough to treat areas.  There are some specialists in it.  I wouldn't think it is the first choice, but in combination with surgery or maybe other treatments, ... I think for peritoneum area, not sure.  J Whippleschmiple Fri, 18 May 2012 00:00:00 GMT I am all too aware that I am hearing of too many with ampullary having recurrences so it not at all benign.  Stage one pancreatic best case scenario, no nodes, clean margins,.... with whipple, chemo, radiation may be a high of 40% cure rate.  Many stages of ampullary have at least 50% recurrence rate.  THAT SAID, I do believe those offered the whipple, 100% get it at right center, best hands, nothing less, and probably chemo-radiation and chemo but though I am not sure about this other person's book in the post above mine, I do know Fuhrman and ESPECIALLY Dr. Servan-Schreiber a doctor and cancer survivor are worth reading, Docs book does deal with more of an alkaline diet too, certain foods/spices.... we can do things to increase odds we do well but no guarantees and for those with a few small liver spots if nothing else, and maybe a single or few small lung spots, fight for surgery too, and even heard of some new peritoneum treatment.  Pklemm-  about half the ampullary cancers are pancreatic tissue type so it still could be ampullary but should be treated with same drugs etc. as pancreatic, ask about ?EGFR with drugs, heard a symposium and even testing some chinese herbs with chemos... less toxicity and greater benefit (under medical trials only I guess) and supposedly a few patients used a new vaccine (maybe only pancreatic) in NJ cancer center but too few to prove much.  Also not saying good or bad but research milk thistle and cancer, may help tolerate chemos...may.  I think look at your diet immediately while you are trying to conventionally kick its butt.  What stage were you at diagnosis? In any nodes then?  Mass. General tried to rightfully scare me and told me even though it was early and small to do more treatment as even though an old chart, so many recurrences.  But for those newly diagnosed, the odds are improving, stats are old, and get in BEST hands imaginable, not local and easy.   Whippleschmiple Sun, 29 Apr 2012 00:00:00 GMT Change your life and your diet right now. My whipple was almost two years ago and I have been feeling mostly excellent since but I waited the cancer came back in a place that can not take surgery and it also ignores chemo. Read Cancer Free, Henderson and Garcia, MD. and find out about Budwig and Barley and coffee enemas. If I am alive in a year it is because God led me to that book. I am doing all the treatments in my own home  and I am playing Golf on Wednesday. kscee Sat, 28 Apr 2012 00:00:00 GMT You know it's funny, when I was first diagnosed with Ampullar Cancer, I really had the impression that this is something that was serious, but not too bad.  I mean, sure, there are no significant studies to see what the long term prognosis will be.  But it could be a lot worse, right?  At least it's not Pancreatic Cancer!! I had my Whipple in April last year.  It was really not as bad as I expected.  My surgeons did a wonderful job and I was up and at 'em within just a few weeks. Of course with an incision of that size (and being a professional Saxophone and Flute player) it was inevitable that I would develop a hernia.  We ignored it for as long as possible.  After all, I was going through Chemo and Radiation at the time. By the way, the chemo was Gemzar and the radiation with with a week long dose of 5-FU.  I went through my first round of Gemzar.  No problem.  I went through the radiation.  28 treatments.  Not too bad, but I was glad I didn't have 30!  Then I restarted the Gemzar.  After the first round (following radiation) my oncologist asked me if I would be willing to continue for an extra 3 months of Gemzar.  That meant a total of 6 months of treatment after radiation.  I of course agreed.  I'd rather do it now then wish I had in a few years. With a few setbacks I was progressing along nicely.  In December we took a break from my chemo so that I could get my hernia, which was enormous, by this time, repaired.  Let me just say, if you are ever offered that particular procedure, pass!  Following surgery, we resumed chemo. I had 2 treatments left when I developed a severe abdominal pain.  The pain turned out to be a small bowel obstruction.  At first we tried to fix this medically.  NG Tube down the nose and no food or drink for about 10 days.  Needless to say, it didn't work. We decided it was time for surgery.  The surgery itself was hard.  Three big surgeries in less than a year really takes a toll on you.  My surgeon told me later that when he removed the obstruction, it was hard and black and like nothing he had ever seen.  He sent it to pathology, and it did indeed contain pancreatic cancer cells.  Now the good news is that it apears to be localized.  The bad news is that the Gemzar did nothing.  Last week I went in for my first PET Scan.  It showed a Lymph node that is affected and a possible hotspot on my pelvis.  This week I started on Folfurinox (sp?).  So far so good.  No real side effects to speak of. For a cancer that was supposed to be relatively speaking, easier to cure, this has been a wild ride. pklemm Sat, 28 Apr 2012 00:00:00 GMT adden note, Donna thanks for asking and I had a very low normal value on CA 19 9 weeks ago, and yes that helped me relax when GI symptoms sometimes.  I am two months shy of two years and no sign issues since surgery, will have scans in July.   I still have to watch what I eat too, especially fats and sugars.   Whippleschmiple Sat, 28 Apr 2012 00:00:00 GMT Donna,   So very sorry for the recurrence.  I don't remember his original stats, what stage was original diagnosis at? details (can send private if want, click below) did they ever use word cure or was there always signs of issue and how many months post whipple then and now?  The biggest issue for ampullary is the rarity does not lead to much testing unless umbrella or periampullary and even under ampullary many tissue types.  I wonder why they don't do CA 19 9 much or consider it that reliable, I asked docs nurse to humor me and do it when he usually does it every 6 mos.  I was offered a year between tests/scans but I don't know too many of us that secure.  I would probably seek a second or third top opinion, maybe someone has some newer ideas.  folfirinox is standard for pancreatic.  Was Bill's tissue type  pancreatic or something else?  But it also has drugs for maybe intestinal too.  I wonder too why they often put little faith in the marker when it seems most or all with issues see it rise at least some.  I have read some pancreatic patients getting it drawn frequently.  I know can be false positives too and read of one case where heavy intake of tea led to false positive so I go off tea a few days prior.  I am reading of significant numbers of ampullary with recurrences or maybe never quite gone upon surgery, so even though no guarantee, it seems better even with most earlier stages to consider extra treatment.  I also can't remember what treatments in total Bill used.  I also feel diet should be changed as I don't think anyone with a periampullary cancer can feel too secure though for some thinking positive is good.  My doc acted like if clean at 1 1/2, 2 years, even 1 with ampullary, recurrences low or very low after but wonder if people on this are seeing that or not.  If not in node, but in liver, some doc might have been convinced to consider surgery....  GOOD LUCK!!  J  Whippleschmiple Sat, 28 Apr 2012 00:00:00 GMT On Apr 14, 2012 5:25 PM Whippleschmiple wrote:  I had intestinal type so got 5FU with radiation and capacetabine (xeloda which turns into 5FU/flouracil ?sp) and if it had spread would have gotten oxaliplatin too.  For pancreatic tissue types it is maybe gemzar, more likely folfirinox or other combos sometimes adding egfr inhibitors (for pancreatic but if pancreatic tissue type or combo may consider that).  There are trials with more modern combos.  ALSO I did a combination of conventional and unconventional.  I had massages and reiki and would use accupuncture to stimulate immune system if had money to do so.  I also completely altered my diet largely following Anti Cancer diet by Dr. Servan Schreiber, am semi-vegetarian, no meat, no regular milk,...  Someone on this was trying large doses of vit C etc, Captain Stoney or some name like that with I believe pancreatic cancer but not sure how he is doing.  IMPORTANT- for especially anyone else getting a new diagnosis of ampullary cancer, THE STATS are often ancient and not adequate.  For some, the added treatment MAY make the difference but it is up to each patient though I don't think we can follow the stats.  I had an aggressive tumor (either poorly or moderately to poorly differentiated) with perineural invasion, lymphatic invasion though clean nodes, clean margins, and small stage 1B.  My tumor board voted against other treatment after surgery but my second opinion said despite stats, his gut feeling was to do it so I did.  I am also almost two years along and well.  I think exercise may make a difference with intestinal type (studies showed help colon, breast and prostate to significantly lower recurrence).  I do not think patients of any peri-ampullary cancer should go back to old habits/lifestyle as something caused it.  I think we need to rethink diet, water (using filtered/reverse osmosis), add green tea, some specific spices, avoid dirty dozen vegies, cut some foods out of diet, add others (ex. garlic cloves, onion family...), largely plant based diet, etc.  I developed my views based on ACS meeting handout, books,...   I think support groups add to chance cure or longevity.  I think it is the whole being on many levels but I also believe in least toxic options of conventional unless toxic ones only options...  We all develop an opinion based on our beliefs and experiences but I worry about people listening to the ancient hopeless stats.  My oncologist warned me the stats were very old.  I had noticed the long term survivors (stages 2 and 3) I knew did radiation with at least bookend chemo and some additional radiation so I followed my own study and later my tumor board docs ALL admitted if it was them or their wives they would have done more treatment.  I wish for all of us that the stats were more accurate.  We are the future stats through boards like this and some who do further treatment will get recurrences but the oddity of ampullary is even stages 0,1, 2,.... about half get recurrences so my attitude is if relatively well what did I or we have to lose by doing more treatment and we were able to use lesser toxic for me.  This is such an odd cancer and I think some docs act like won't be possible recurrence if early, the one exception from what I read was stage 1A well-diff, with no high risk features like I had.  GOOD LUCK!!!!  Maybe read Gerson,... which I do not know if does or doesn't work.Hi whipplesschmiple, ltns, of course my fault cause after our remission Dx, got busy with enjoying living without worries. Of course, this didn't last but 3 months and the cancer is back and now Bill has spots in his liver. We are getting aqainted and up close and personal with that elixir Folfirinox. Apparently a lymph node got cute on us. As an RN, I was surprised when our doctor put our recheck 4 months after our remission DX. I wasn't happy with that, but got complacent I guess. At 3 months I got antsy and demanded my husband be rechecked sooner. CA 19 was already at 3,000 and PET confirmed the "cute lymph node and two "hot spots" in the liver. I have been so angry. you know I can understand not having Petscans each month, but CA 19 blood tests are relatively inexpensive. I asked him why not at least the CA19 each month post remission DX. Didn't get a good response, just looked at me like I was crazy!! It costs $5.00 bucks for this minor but important test, easily paid out of the pocket. So now our repeat CA19 shows 6332 drawn just before first chemo on this past Monday. Well, thanks for listening, just venting to those who understand. Hope all is well with you, Thanks Donna bvan1 Thu, 26 Apr 2012 00:00:00 GMT I never assume anything, these blogs have been a big help, I will take your advice and look at these books and suggested readings tht you have pased on.    Thanks Ken the best of luck to you..   Cary clcampbell Thu, 19 Apr 2012 00:00:00 GMT Even a CA19 9 in 60s is high, when was last time it was low?  Did you feel sick? Lose a lot of weight?  IF you choose not to use conventional, read fast.  I really think as soon as we recover from surgery we need to look at what we eat/drink ---what to avoid and what to take in.  I think most people don't think that same habits can lead to more problems but it seems logical that gastrointestinal cancers are especially sensitive to what we eat and drink.  I also think many of us had ongoing digestive issues for a while whether an inflammatory condition or ulcer or whatever.  I never thought I could assume surgery, radiation, and chemo were enough.  I even researched colon cancer and breast and prostate cancer recurrence are half or even less with a lot of exercise.  Support groups increase longevity,... as can faith, fight to survive vs if someone gives up.   Whippleschmiple Thu, 19 Apr 2012 00:00:00 GMT the CA19 went from 60's to 189 in two months. The tumor isn't in any organ, it is in my body cavity wrapped around my SMA (Superior Mesen Artery) - Hopkins Docs' agree it is not operable and it has already proved to be totally resistant to Radiation. They tell me thet Chemo would double my life expectancy, not interested. I am fine with all of this. I am very optimistic about God and natural medicine. Get the book I cited. There are things in it everyone shoul do.  kscee Thu, 19 Apr 2012 00:00:00 GMT I have not gone back to the old habits, I have increased my vegetables a litle at a time.  In the past, no vegetables.  I have changed my diet as well.  The doc is goping to put me on some enzimes. My out look has been positive and remain so.  I will keep you in my thoughts.   Good Luck   Cary clcampbell Thu, 19 Apr 2012 00:00:00 GMT Ken, I am sooo sorry they would say that and after so many don't think diet may play a role.   Is is in your liver, elsewhere?  If only in a few spots in liver, or lungs maybe cyberknife, maybe surgery for the spots, if more spread than 1-2 more top opinions fast.  I had two top opinions and they were very different opinions.  When did your ca 19- 9 start going up?   I had whipple one month before you did.  Did you have symptoms and what where they?  I periodically have nausea, low cramps and then it lets up for many weeks or months and ca 19 9 remains very low, could simply need omeprazole again or some other digestive solution. You also have nothing to lose by going strict with diet, maybe acupuncture, maybe gerson, maybe other theories ---I said I liked anticancer diet book by Dr. Servan-Schrieber.  There may be a trial?  Get creative and fast, maybe call CTCA????  They don't likely see much ampullary.   Lance Armstrong and many others told no chance and they are fine, depends on how much of a fight?  Don't give up on conventional either.   Whippleschmiple Thu, 19 Apr 2012 00:00:00 GMT a book: Cancer Free by Henderson and Garcia, get it from Amazon NOW. Lots of info you should consider. They followed a mass in my abdomen for 12 months, did steriotactic radiation last August and Monday 4/15, they told me I will die in 8 to 10 months. Now I am free to employ the weird stuff in this book. I will trust that God and  God's natural substances in the book will do the trick.  kscee Wed, 18 Apr 2012 00:00:00 GMT My advise, get real serious with diet, real serious. My doctors told me diet didn't mater and, after almost two years, they told me Monday I had 8 to 10 months to live (yes, that is what I said) - and this is Johns Hopkins I am talking about. Also, ask around about enzimes. They took your gall bladder which makes bile to add alkeline to the digestive mix as it enters your duadenum. OOPS, they took your duadenum. The body is amazing in how it can compensate but try not to be the tough guy, give your body some help. Surgeons and oncologists don't seem to know about this. I have really felt great for the last 18 months so don't be fooled and go back to your old bad habits (I assume you are a type A as well).                        Ken   kscee Wed, 18 Apr 2012 00:00:00 GMT My whipple was on Feb. 14th 2011.  No Nodes were invovled, no chemo nor radiation. I have gained back about 40 of the 70 that I have lost.  I feel so much better over all.  Aside from the surgery area I cant complain.  I was 46, now 47.  I has been one year 2 months and three days since the surgery, I am now beginning to play basket ball with my 15 year old. I have more confidence in myself now than I ever have before, more to live for, and wanting to do it right. Cary clcampbell Wed, 18 Apr 2012 00:00:00 GMT I too have not been through the chemo nor radiation, by doctors request.  Now they have found a mass on my thyroid, I have been assured that it is nothing, I still wait with baited breath for the results to come back. clcampbell Wed, 18 Apr 2012 00:00:00 GMT  I had intestinal type so got 5FU with radiation and capacetabine (xeloda which turns into 5FU/flouracil ?sp) and if it had spread would have gotten oxaliplatin too.  For pancreatic tissue types it is maybe gemzar, more likely folfirinox or other combos sometimes adding egfr inhibitors (for pancreatic but if pancreatic tissue type or combo may consider that).  There are trials with more modern combos.  ALSO I did a combination of conventional and unconventional.  I had massages and reiki and would use accupuncture to stimulate immune system if had money to do so.  I also completely altered my diet largely following Anti Cancer diet by Dr. Servan Schreiber, am semi-vegetarian, no meat, no regular milk,...  Someone on this was trying large doses of vit C etc, Captain Stoney or some name like that with I believe pancreatic cancer but not sure how he is doing.  IMPORTANT- for especially anyone else getting a new diagnosis of ampullary cancer, THE STATS are often ancient and not adequate.  For some, the added treatment MAY make the difference but it is up to each patient though I don't think we can follow the stats.  I had an aggressive tumor (either poorly or moderately to poorly differentiated) with perineural invasion, lymphatic invasion though clean nodes, clean margins, and small stage 1B.  My tumor board voted against other treatment after surgery but my second opinion said despite stats, his gut feeling was to do it so I did.  I am also almost two years along and well.  I think exercise may make a difference with intestinal type (studies showed help colon, breast and prostate to significantly lower recurrence).  I do not think patients of any peri-ampullary cancer should go back to old habits/lifestyle as something caused it.  I think we need to rethink diet, water (using filtered/reverse osmosis), add green tea, some specific spices, avoid dirty dozen vegies, cut some foods out of diet, add others (ex. garlic cloves, onion family...), largely plant based diet, etc.  I developed my views based on ACS meeting handout, books,...   I think support groups add to chance cure or longevity.  I think it is the whole being on many levels but I also believe in least toxic options of conventional unless toxic ones only options...  We all develop an opinion based on our beliefs and experiences but I worry about people listening to the ancient hopeless stats.  My oncologist warned me the stats were very old.  I had noticed the long term survivors (stages 2 and 3) I knew did radiation with at least bookend chemo and some additional radiation so I followed my own study and later my tumor board docs ALL admitted if it was them or their wives they would have done more treatment.  I wish for all of us that the stats were more accurate.  We are the future stats through boards like this and some who do further treatment will get recurrences but the oddity of ampullary is even stages 0,1, 2,.... about half get recurrences so my attitude is if relatively well what did I or we have to lose by doing more treatment and we were able to use lesser toxic for me.  This is such an odd cancer and I think some docs act like won't be possible recurrence if early, the one exception from what I read was stage 1A well-diff, with no high risk features like I had.  GOOD LUCK!!!!  Maybe read Gerson,... which I do not know if does or doesn't work. Whippleschmiple Sat, 14 Apr 2012 00:00:00 GMT My CA19 has been as low as 3. Johns Hopkins really pushed the chemo on me as a "just in case" measure but when I read the stats, I declined. Now that I have new cancer activity I might still decline. There are too many ways to cure cancer, they are not expensive but they are not easy. On Monday I will ask to have my tumor typed to see which chemo would have the best chance of success.   kscee Fri, 13 Apr 2012 00:00:00 GMT Ca 19-9 may or may not be a problem but I really wish they would encourage chemo and radiation then chemo after whipple even if no proof it works as I think some do much better and longterm not just months.  If God forbid you had an issue, depending on decisions, don't rule out more treatment, and would get more than one opinion even if at top center and I have read some with a few small liver tumors have gone on to get resected and be fine.  Sometimes they do that with colon cancer and sometimes with excellent results.  I had my whipple 1 month after yours.  I had some symptoms, asked for ca 19-9 but it was less than 10 so I wait for scans in July and presume ok.  I also wish in general we would all think the best not the worst, about 50% overall get recurrence with ampullary and clearly less or more depending on stage.  The disadvantage for all of us is the rarity, the lack of good studies, the lack of incentive to study us as it is rare and for that reason you would think regular pancreatic would have tons of research done on it.  At rates of 3-6 per million we are very rare indeed.  I know a 9yr survivor, a 15 ish year survivor and heard of two 20 yr survivors and there are many out there just going on with their lives.  good luck with scans and at my age if I had more problems I would fight for an answer.  J Whippleschmiple Fri, 13 Apr 2012 00:00:00 GMT Thanks for your story Ken!!  You have a great attitude! Good luck with your scan on Monday!!  I have to wait until January for my next scope. gastro1 Fri, 13 Apr 2012 00:00:00 GMT My whipple was June 9 2010 and it was rough with complications; I was stage 3 with 3 nodes involved. I was an impatient at Johns Hopkins for almost a month. I have been feeling good for about 18 months now but my CA 19-9 is back to 179 so I am going for a scan on Monday. I never had chemo because no one could show studies that it would extend my life more than 5 months if I live 5 years (3 to go). Look at statistics this way, if I live, I will be 100% alive. I am 65 now and 35 lbs lighter than when this started but, in my vanity, I have found that my face looks better if I smile and my body looks better if I maintain my posture.  There are lots of books, my current favorite is Cancer Free by Bill Henderson and Dr Carlos Garcia. The problem is that there is too much material and this book is very irreverent to the traditional medical community. Also, don't overlook The Acid Alkaline Food Guid by Dr Susan Brown.  My goal is to live long and die young and to accomplish that I have made changes in my life that I should have made 30 years ago. I believe that my body can cure itself with these changes but the real test will come on Monday.                                          Ken kscee Fri, 13 Apr 2012 00:00:00 GMT Indeed!  gastro1 Fri, 23 Mar 2012 00:00:00 GMT Sometimes I think we are all in a holding pattern until its all gone or it bust lose again.. clcampbell Thu, 22 Mar 2012 00:00:00 GMT Well!  Still in a holding pattern until my next scope in January. gastro1 Thu, 22 Mar 2012 00:00:00 GMT Me too, and how are you doing?? clcampbell Thu, 22 Mar 2012 00:00:00 GMT It's great you are off your pain meds!  It sounds like you are doing well...hope the news from the oncologist/quarterly check is great. gastro1 Thu, 22 Mar 2012 00:00:00 GMT Hey J,   I am one year out, still feel the effects ever so often but I am moving forward, keeping eyes forward, wathcing the path.  I am going for my quarterly check this month I will let you know how things go, and thanks for being there.  Before I go, how are you doing? clcampbell Thu, 22 Mar 2012 00:00:00 GMT Things are stabilizing a bit now, the soft stools are still pretty regular, even with the change in the diet and with some new medication to help with the spasms in the stomach. I am increasing my activity and feeling better, but when I stop for the evening it is hard to move, even getting out of the chair becomes difficult to say the least sometimes.  I am however proud that my diabetes has stabilized and my wiehgt has stabilized. I am off of the pain meds completely, still take some muscle relaxers from time to time to help with the rest at night. I go back top the Oncologist this month.  I will keep you guys informed.  You just dont know how much it means to me to talk and chat with you all. clcampbell Thu, 22 Mar 2012 00:00:00 GMT Sometimes stage one T1 no nodes, especially if well-differentiated they will not recommend any further treatment, mine was a judgment call.  One board voted to do surgery only on me, other doc said do the whole thing even though no proof it may help.  It is a clearer argument to try more than surgery when in nodes and pancreas.  Mine was T2 but stage 1B.  You like I also used a NCI center!  My docs told me very early, very small but since it was either poorly differentiated or moderately to poorly and in lymphatics (NOT nodes) and had perineural invasion, my second opinion pushed for the radiation/chemo under view of high risk features.  Be followed frequently (at least twice a year initially) and respect any symptoms as even early cases can have recurrences though if was well-differentiated, and if did not have perineural invasion or lymphatic invasion then may have very high cure rate.  Overall I was give high rate cure one, but Boston said if do chemo/radiation THEN good chance ok.  I am nearly 1 1 /2 years out and first year with these is very significant, 2nd year.... but on rare occasions have found even after 5 years ampullary patients getting a recurrence, and sometimes people think all is well and all is not.  So have faith, but keep eyes open.  I wonder if being so rare how we are to ever get more targeted approaches?  J in NH   Whippleschmiple Sat, 24 Dec 2011 00:00:00 GMT The soft stools or dumping that I call it come and go.  Right now I am taking no enzymes. There was nothing in the Lympth nodes.  The cancer was found in the small intestine growing back into the pancreatic region.  The stage was a 1T I believe.  The surgeon said it was at the earliest of detection. My energy levels remain good for the most part, but by the end of the day I am exhuasted.  My job allows me to walk a great deal and do some climbing.  So I am staying fit so to speak, I am eating smaller meals but more frequently when I can. But the soarness is still the issue, although the my duration between the bad and the good is getting better. I was 46 when diagnosed.  I had the whipple procedure done at St. Lukes, In Houston, Texas.  I feel they did a wonderful job.  clcampbell Fri, 23 Dec 2011 00:00:00 GMT Some people take up to a year or maybe more to feel their best.  What stage was it, any in nodes or in pancreas, do you know what tissue type (mixed, pancreatic, intestinal), degree of differentiation... other factors.  Keep trying to be active to build endurance and many small meals/day.  Any post-whipple light, floating, soft stools, then may need enzymes (and prilosec/omeprazole with them), if not, keep an eye on nutritional values too.  I find it interesting who is told to use other treatments or not.  I was a healthy, fit, young looking 53 at diagnosis, and being a woman no one was thinking cancer that hits more men about age 70.  Try probiotics too.  J in NH Whippleschmiple Fri, 23 Dec 2011 00:00:00 GMT I am 10 months to the day, post whipple, no chemo no radiation, still go through the screenings.  I am 46, January 28, 2011, I ws diagnosed with Ampulaary Cancer.  The months following the procedure have been a roller coaster ride to say the least. Still I have my days where I am good and feel like I can conquer the world, than my other days where it takes every bit of energy to just walk.  I am a safety manager for a construction company, so I was able to come back quickly. I use the job and the ability to walk as a therapy, for each day.  So far so good.  All the tests have been neagative.  Like every one else the Oncologist is working with me on the soarness that I feel and the dumping that my body goes through on a pretty regular basis. I am thankful that I have found you all to chat with, If I can help anyone or if I need help please just write. clcampbell Wed, 21 Dec 2011 00:00:00 GMT I am not ready emotionally to skip scans yet but was offered to go a year.  At 1 1/2 years post-whipple (in a month) I figure the subject will come up again.  I figure eventually I switch to MRIs and I too don't plan on being radiated at airports.  I was on omeprazole until a bit after radiation/chemo completed and because I wanted to wean off it I learned I had to do it EXTREMELY slowly so I literally emptied capsules by fractions over weeks.  I see reasons for it and against it but if on enzymes patients need it.   Take plenty of Vit D and Calcium (check D level first).  I have GI issues occasionally but not the runs.  Our GI tract is different so our issues are not the same as those with the same system they were born with.  I think at 2 and then 3 years the risk for me will be quite low and they imply that big drop down at 1st year because I had high risk features.  Whippleschmiple Sun, 11 Dec 2011 00:00:00 GMT I had a pyloric saving whipple also.  I get intestinal discomfort if I don't take my daily omeprezole (prylosec).  My radiation oncologist recommended I take it for the rest of my life.  I stopped for a while because I don't have acid reflux and I have my pyloric valve.  When I stopped, or if I miss a few days, I get irritable bowel pain and discomfort.  Don't ask my why an over-the-counter drug for acid reflux from the stomach up, keeps me from having discomfort from the stomach down.  It just does.  I am very active, and eat anything and everything.  Even with the omeprazole (COSTCO has the cheapest prices), a high fat dinner or meal will make me regret it the day after.  Four year survivor today.  I resist annual ct scans.  My oncologist has agreed to annual EMRIs.  I don't want or need any more radiation.  I always ask for a pat down if I get in an airport TSA body scan line.  Quill Sun, 11 Dec 2011 00:00:00 GMT I would be too scared to stop scans at 3.5 years but my second opinion had little faith they catch early recurrences though my oncologist does NOT agree and both are top doctors.  It is reassuring for us newer to this to read of 6 and 7 year survivors!!  I am aware that even early stages as much as 1/2 or more may get recurrences.   Mine was early but aggressive so I hope that means more likely I am past the risk as would be early in the game.  My doc offered a year between scans, but I am only at 15 mos so too soon.  Supposedly intestinal type is less aggressive although many factors make these aggressive or not.  I did similar treatment, radiation and 5FU bookends and 6 cycles xeloda which becomes same.  It isn't clear cause, chemicals may be one cause.  One 9 yr survivor had agent orange exposure.  I was told at 5 years I would be cured.  Whippleschmiple Wed, 12 Oct 2011 00:00:00 GMT Hello everyone, I first want to say thank you all for your help on this tough subject.  I am so glad you all are survivers with this horrible cancer. None of the chemo treatments worked for my Dad right from the get go and he fought to the end, but the Doctors did what they could for him. This is a great site, read the postings and do research.  He was a great man all around.  Tanya   lovebird Mon, 10 Oct 2011 00:00:00 GMT Hi - my case is similar to yours. I am 72 female and had the whipple nearly 6 years ago. It took almost two years to feel almost normal again. But for the last 4-5 years life has been good. I eat healthy diet, work out at Curves atleast 3 times a week and stay active with my art, grandkids and husband. osteoporosis treatmentI am curious to know what you have decited about yourosteoporosis treatment. My family doc suggested Fosamax - but I am not sure if I want to take it..... latest bone density test showed slight improvement in my hip but spine is still the same.  I contribute it to excercise and eating a lot of greens..... I did cut down on dairy.....oh I forgot to mention: 6 weeks after my whipple I had total Historectomy (also cancer) done. My 125 tumor marker was slightly up and doc suggested a PET scan..... had to wait 2 weeks for the results,  but it was "completly negativ" so next visit in Jan 2012.......... omabina Mon, 10 Oct 2011 00:00:00 GMT Love your screen name! I stopped scans at 3.5 years.  I was not comfortable with that, but my oncologist assured me that with my particular cancer if it came back a scan would not provide early diagnosis.  My surgeon kept me until last year.  He also followed me for bilateral intraductal breast hyperplasia. I live about 90 minutes away from Birmingham where I received treatment.  My FP did CA 19 markers, but this year was the last planned test. In addition, they do liver enzyme blood tests each year.  Yes, they believed, my cancer was intestinal in type.  That was just about the time that they were discussing that ampullary was not necessarily only related to pancreatic cancer.  I had 2 out of 8 lymph nodes with microscopic traces of CA as well as 1 smooth muscle cell.  The original tumor was relatively small.  I, too, had the pyloric saving Whipple.  I can eat meat, but do not often have red meat.  High fat, and sugar can trigger bathroom trips.  Sometimes I get an oil leak at night.  Only 6 times in 7 years, but it is the pits when it happens.  Think I have narrowed down the offending foods. Unfortunately, I gave the last copy of my path reports to my FP doc last year.  Frankly, I was hoping to not have to know the details again (naive I know!).  I do not recall the differentiation.  At the time I was told I was Stage II with modifiers.  I had a visit with a diferent hemotologist/ oncologist this past week to discuss my osteoporosis treatment.  He wanted to discuss the cancer and told me I was stage III, due to lymph nodes. So, I don't know. I began radiation  and chemo concurrently.  Radiation of 6 weeks with weekly 5FU for a 5 on 2 off schedule.  However, my white and red counts began to tank after 5 months. So it took us longer to finish than planned.  Like you, I was healthy and fit prior to diagnosis.  I am also a positive person. Prior to Whipple I had my gallbladder out 4 years before dx.  There was speculation that a gallstone may have been left and caused the cancer.  The surgeon who preformed the gallbladder surgery said that was not possible.  We'll never know. I grew up in the Finger Lakes of upper NY.  Drank and swam in the lake which probably contained DDT, lived in a mobile home for several years as a child with parents who smoked.  Bottom line is a gene mutated at some point for some reason.  The greatest gift has been seeing 4 new grandchildren born, lots of travel and time with family and friends.  Would love for them to say cure, but long term survivor/no evidence of disease works just fine right now. I look forward to good reports for you, too!   dlrmadison Mon, 10 Oct 2011 00:00:00 GMT dlr-  I am glad to see your post, there are so few of us ampullary cancer patients and we need (at times) the reassurance of those that did well long-term.  I just reached 15 mos clean and counting!  Did you stop scans at 5 years?  I usually have a very positive attitude, what you call a fighting spirit too, but recently lost someone to this--who did some extra treatment but couldn't finish all suggested as he had complications despite higher stage.  I saw an old post that you were stage 2.  When you say microscopic involvement, do you mean lymphatics (in addition to nodes), did you mean perineural?  Do you know if yours was intestinal or pancreatic tissue type and if well, moderate, poorly or undifferentiated?  I was stage 1B but had it in nerves, lymphatics (but not in nodes), was intestinal, was either poorly or moderately to poorly differentiated (2 opinions) adenocarcinoma which is aggressive.  I had pylorus preserving whipple, plus 5 1/2 weeks radiation with 5FU bookends (3 days beginning and end) then 6 cycles Xeloda which becomes 5 FU.  I finished all in April and was diagnosed around age you were, 53.  I exercise daily and massaged scarfade daily after 2mos post whipple and don't have pain at scar, no long term issues radiation.  Digest well if eat mainly vegetarian, milk-alternatives (except organic yogurt), low fat,...  I have always been survivor type, beat lots of medical challenges since teens.  I am back in college and looking to resume work soon.  I am very happy you did so well with some positive nodes and yes like you imply, even though articles often won't confirm benefit, everyone I know of who has been a longterm survivor of this at least did whipple and chemo-radiation, most chemo afterwards too.  But I know that is no guarantee.  I know a 4 yr, 9 year and 15 year survivor, have only met the 9 yr. survivor a vital man in his 70s now.  I am yet to meet another female ampullary cancer patient.   Are there others in New England area?  J in NH Whippleschmiple Sun, 09 Oct 2011 00:00:00 GMT I agree with pklemm.  I am an almost 7 year survivor of amullary cancer.  2 lymph nodes with microscopic involvment and same for a smooth muscle.  Had a Whipple, 8 months of 5FU (it kicked my immune system about half way through) and 6 weeks of radiation.   Took about 2 years to gain 5 pounds, then after five got to 10 and now am at 15 pounds back and am stopping. Have some radiation or post surgical nerve sensitivity, but it is managable with capsacian cream, simple lidocaine spray, and loose clothing.   It was a scary diagnosis, but I hope that others posting on this board will be able to post their own story survivor story in 7 years.  Hope to join you! Life fabulous and every day is a gift.  Just turned 60 a couple of weeks ago. dlrmadison Sun, 09 Oct 2011 00:00:00 GMT I couldn't agree more with Sennekat.  I had my Whipple in April of this year.  The Ampullary tumor was removed but, like your Dad, 2 of the 22 lymph nodes came back positive.  I have so far completed all of my radiation (28 treatments) and am now taking Chemo.  I get Gemzar once a week for basically 6 months.  The prognosis is very good.  Here's the important part.  This treatment is not that bad.  Within a few weeks of my surgery I was able to get back to work.  Now that I'm completely healed, I'm back working 40 - 60 hrs a week.  Even through my treatments.  Sure, some days are better than others, but there is no reason to lay in bed and be sick!  Once you spend some time at the cancer center, you'll see just how lucky we really are!! pklemm Wed, 05 Oct 2011 00:00:00 GMT Hello everyone and I'm so thankful for having this topic up :) My mother was diagnosed with Ampullary Carcinoma in February 2010, and she had follow-up surgery at April 2010. Went under chemo (FU-5 +Gamzar), no radiation and is now on break from any intervention. However, her CEA is slightly increasing, and it elevated from 3.9 2 months ago, to 5.4 now. How much should we be concerned about it? She's doing regular MRI and CT scans, and nothing is shown. CA 19-9 is steady, not increasing, but they did say her Pancreatic Ducts are bit dillated and she's scheduled to do some "baloon duct expansion" procedure. If anyone has experience with increased CEA post-surgery and this procedure, please share, I'll be really grateful! atuzovica Tue, 08 Feb 2011 00:00:00 GMT Sorry I am just getting back to you on this.  My understanding is that cancer usually travels the path of least resistance when spreading.  Mind did not.  My cancer crossed into nerves.  My cancer was also poorly differentiated and I had lymph node involvement.  Plus mine was adenocarcinoma which I understand to be more aggressive.  Hope that clarifies things. Ellen brotzdesart Fri, 17 Dec 2010 00:00:00 GMT Hi brotzdesart (and anyone else who wants to respond,)   I posted a reply on page 3 of this post, so won't repeat much.  I was diagnosed stage 1B ampullary with some high risk features, had pylorus preserving whipple (early July,) chemo-radiation and am about to start Xeloda.  I need to go back to work, and go about a normal life, dating life included (and how much to tell and when,) and need to feel healthy and be healthy.  i am back to half my exercise routine, my weight is back to normal and I look very healthy.  I am trying to learn more from other ampullary cancer patients and also find someone with some of my specific risk issues too.  What about your situation was considered very aggressive?  J in NH. Whippleschmiple Sat, 27 Nov 2010 00:00:00 GMT Ray,    I doubt it is any higher incidence in NH, I grew up in NY, only moved here early 90's.  So many articles make a big deal out of differentiation and perineural invasion so am doing this adjuvant treatment as advised by second opinion in Boston.  I never threw up, despite all this, since first day with pancreatitis in May, and mostly was constipated vs. anything else.  I have an intact stomach/pylorus which may account for less diarrhea.  My weight is back to normal.  I am more concerned about not taking Xeloda than taking it, but will speak up if issues with drug.  I will be taking the Xeloda alone (radiation is past) and I think its two weeks on, one week off pattern, did you take it nonstop or with breaks?  You have survived a few years?  What stage were you and was it known to be pancreatic or intestinal tissue type?  Did they mention whether peri-neural invasion, type of differentiation?  I am considerably younger so toxicity may also relate to age.   Glad you are doing well, I also know average age for this is about 70, so they kept calling me young and it never showed on scans so could have been missed if I hadn't been so ill from blockage.  J Whippleschmiple Fri, 26 Nov 2010 00:00:00 GMT Take it easy with the Xeloda, the warning to stop with side effects needs to be taken very seriously.  I didn't wait for multiple occurances a day to stop, if I had one occassion of nausea or diharrea I stopped immediately.  Many days I was only able to take the morning dose and skipped the evening dose.  in the conculsion of the 6 weeks of xeloda and concurrent radiation I took 70% of the xeloda and had toxcicity from the xeloda.  my system could not clear it out as fast as a younger person (i-m 77)  anyhow, I can only hope that the toxcicity gave the added whallop needed to knock out any microscopic cancer cells. The oncologist originally told me I wouled be on a maintenance low dose of xeloda after the 6 weeks, but did not recommend due to the toxcicity.  If yours was caught early and the surgeon feels he got everything, you should do fine.  I too was in good health prior to surgery and not had any other surgeries or illness/health problems.  Fortunate 6 months post op I am feeling VERY good and have no pain, my only complaint is gas, but do take probiotics recommended by doc and it does give some relief. But gas is good, means nothing is blocked.   Relax, enjoy life and read all you can online about this dreadful disease... it is so very Rare...  interesting that you are from NH, I grew up in Laconia, leaving in the mid 70's and now live in North Carolina.  Wonder if there was something in the water in NH?? that may have contributed to this cancer?   My best to you, Regards, Ray         RayLogu Thu, 25 Nov 2010 00:00:00 GMT Hi.  I just joined.  I was diagnosed with Ampullary Carcinoma, intestinal type, mid June 2010.  I keep wondering how many are in a similar situation.  I was stage 1B, intestinal type, 1.6 cm-small, 11 clean lymph nodes, BUT either moderately-poorly or poorly differentiated, with lymph invasion (not nodes,)  and perineural invasion (high risk features.)  I had pylorus-preserving whipple early July, and end of Sept. to a month ago had chemoradiation (bookends 5FU) and am about to start Xeloda for months.  I had two very different opinions on prognosis, one good, one high rate of cure.  I was very fit woman, passing for younger than my early 50s at diagnosis/surgery.  I am looking to relate to others in somewhat similar situations.  J in NH Whippleschmiple Thu, 25 Nov 2010 00:00:00 GMT Ray....you have really helped my sister (lovebird) and I out through this and you have made a special place in our hearts. I just wanted to say thank you!    MrsFitz Fri, 19 Nov 2010 00:00:00 GMT That is AWESOME brotzdesart!  Thanks so much for sharing this with us......my dad is on the chemo pack and does radiation everyday...he is doing great with it so far (he is 3 weeks done).  We are still feeling great, uneasy, happy, sad, blessed and all those mixed feelings still....but thanking Jesus for our blessings and lives everyday.  Again thanks for sharing your story. MrsFitz Fri, 19 Nov 2010 00:00:00 GMT Thank you Ray.  I will try again with the family and friends.  They all came together before the surgury, but have now disappeared and this is the time he needs them the most.  They feel my sister and I have blown everything up and he is fine.  My sister and I stated the facts, and what the doctors told us.  They do not realize that it is not over and he still needs their support.  We know how lucky we are and are very thankful.  He is doing better than the doctors thought he would, but as you know it was and is a difficult road.  I did not realize how much this upsets my dad.  I ignore and move on, but dad is angry.  I want to fix everything, like he does for me.  I want to email everyone and tell them what they are doing to him.  He is strong but he needs support. You find out who you can count on, there is some friends that do come around and understand, but they have also went through it and know how important it is for support.  Sorry as you see I am very open.  Maybe that is the problem. You are lucky to have a wife who is there for you.  Thank you again. lovebird Thu, 18 Nov 2010 00:00:00 GMT One of the first things a friend (cancer survivor) told me and my wife after my diagnosis. "You must tell people that want to visit that they MUST be positive, no negative conversation at all.  If their heart is in right place they will truly understand." Also, suggest they do not ask questions about his cancer or surgery, just let him talk about what he wants to talk about.  If he speaks about his condition just remind visitors not to press with questions. Call his friends/family that are avoiding him and tell them that he needs their support, and that he is  not contagious... what are you waiting for to visit?  It may help to add, if you are waiting for the funeral to visit, it is NOT going to happen, so please come for a visit ... we need your support. Arrange to have him get out and meet some of his buddies for lunch, or stop by his place of employment for a visit, that may boost his spirits and let them see that he is doing well. This is indeed a difficult time for you and my heart goes out to you.  I had many emotions and bad times that I can't remember much of that time, my wife reminds me from time to time of events and I am surprised that it is blank in my mind.  She kept the family informed via email and I've re-read some of the emails and can't recall much of what happened the first few weeks.  Your love, encouragement and being there for him will help him to turn the corner to better days. Regards, Ray                                 RayLogu Thu, 18 Nov 2010 00:00:00 GMT My dad was a diabetic before the surgery, but was only taking the pill for his diabetes.  Now, with him having a small portion of his pancreas out, he is now on insulin shots. He has always been in great shape, so with him losing 40 pounds it really showed.  He was the same way as you, he watched everything he ate.  No sweets, no fried foods, and watched his calories.  The dietician told him to stay on the same calorie count, but he continued to loss and she told him it will take a while to get adjusted.  I bought up, “if he stays on the same calorie count, how is he going to gain weight?”  The Oncologist wants him to increase the calories, but stay away from the empty calories and increase the insulin.  Depression is the difficult part.  He is doing better and is now talking to me about things that he is upset about.  I think the family needs coaching on what to say and what not to say to him and how to act around him.  He wants things to be normal and not for cancer to define him.  How do you tell people he is close too, not to stare at him, or for them not to just talk about him and cancer?  He wants to hear all the good things that are going on and to talk about other things than, cancer.  People are avoiding him, even though he was there when they needed him.  I know he needs to talk with a someone, but it will not happen. Thank you for helping others and their family with this. lovebird Thu, 18 Nov 2010 00:00:00 GMT Hi, I had trouble with gaining weight after the initial weight loss and it took me a good three years before my oncologist said I no longer looked gaunt.  But I had myself on a very restricted diet -  low low fat, little to no sugars and that made weight gain hard.  After I quit this diet I finally put the pounds on and now weigh about seven pounds over my start weight which is fine as I was always underweight.  But I learned recently that weight loss doesn't necessarily have to go hand in hand with chemo and that they recommend that all cancer patients see a dietcian.  So if your dad hasn't gone yet, he might want to see one.  I also learned that with the depression, the sooner it is treated, the easier it is to treat.  I hope all goes well for him. brotzdesart Thu, 18 Nov 2010 00:00:00 GMT He did tell us we were smothering him, so we did back off a little.  Now that he is eating more, he is start to feel much better. Best of luck to you, it sounds as if you did well with this procedure too. lovebird Thu, 11 Nov 2010 00:00:00 GMT The recovery is a slow process, the chemo and radiation will make it more difficult to gain, but try not to focus on the weight gain.  6 month spost op I'm only 6 lbs over my all time low weight, still look thin but am feeling so good and eating  good.  The chemo hopefully will not have too much effect on appetite, but the depression is difficult.  Try to get him to focus on how well he has done so far and how much better things will be in a few months.  In 6 or 8 months he will be like the new mother that says she will never have any more children after child birth.  Time heals the pain and memories fade and that mother has another child. Not to imply that he would want another whipple... but he will be on this board to encourage others in months and years to come, telling others how he endured and strived to be a survivor.   The love for family and knowing this is the WORST it will get and it will indeed be better as days pass will pull him through.  Dont' smother him, but do your best not to leave him alone, he needs a watchful eye and loving family there for him in the worst time and in the best of times he will enjoy his time alone. my best to you and your family, I know this is tough, but your dad will pull through this.  He is far younger than me and has so much to live for! regards, Ray     RayLogu Thu, 11 Nov 2010 00:00:00 GMT Hello brotzdesart, My Dad did, is, going through the depression stage.  It is on and off.  Us kids are trying to pull him through it and it looks like it is working.  He sees himself getting thinner and thinner and hates the way he looks, but last week he gained 3 pounds, but lose one this week.  Atleast it is an improvement.  He was at stage 11A adenocarcinoma also.  He is on a chemo pump for 6 wks and radiation for 3 wks.  This is the second week now and is going through it very well.  I wish he would gain more weight just because I get worried on how much he will lose with chemo, if any. I am so glad you anwsered my sister, we like to hear the bad, but more importantly the good. Thank you, Tanya lovebird Thu, 11 Nov 2010 00:00:00 GMT Hi, I was 45 when I had whipple surgery for my ampullary cancer and unfortunatley had all sorts of complications from the surgery.  It will seem to your dad that he will never recover his energy but he will - it just takes time.  This is a very scary cancer - so little is known and the unknown will cause a lot of stress and anxiety which can lead to depressed days.  I went through a very difficult time with depression and it started in the hospital.  Survival rate depends on the agressiveness of the cancer and the stage.  I was stage IIA but had a very agressive adenocarcinoma.  I was basically told by one doctor that radiation was not going to be worth the trouble as I was in such bad shape from the surgery and my cancer was so agressive.  Another doctor was willing to do the five weeks of radiation and I breezed through it!  I had a 72 hour pump of 5Fu every other week during radiation and did gemzar for six cycles after that. Once again, I breezed through.  Well now it has been nearly three and a half years and my oncologist said that is significant - she expected that if it was going to come back it would have already.    People survive this.  That is the point I am trying to make and why can't it be your dad who survives?  Best of luck to you all. brotzdesart Thu, 11 Nov 2010 00:00:00 GMT hi there becky jumped over for a look on this board ;o) my sister (42) had her whipple opp at the end of january this year for pancreatic cancer, just thought i would let you know a few things thats she has experienced since, you mention that your dad has been getting depressed the lack of energy my sister still struggles with, but roughly 6 weeks after her operation the local GP prescribed her anti depressants, she hadnt asked or even had the time to feel depressed yet but the doctor new what was coming!!, she hit a low stage roughly 4 months after opperation and during chemo it was really tough for her, she questioned the diagnoses was pretty sure there had been a mistake, didnt want to continue with chemo, we were still getting out for morning coffee bit of shopping but she slept for hours afterwards which got her really fed up with not being able todo anything with the kids, she had been reffered and is to see a councollor next month, she still get quite upset, we all had to go thou genetic testing mom, 2 other sisters and her 2 kids we are all okay for just now, 6 months of chemo are over with we managed a 2 week family holiday, parents, sisters, hubbys and all the kids during the treatment :0) she is on a 2 month break due back for colonoscpy in november (polyposes of her bowel) then chemo doctor, he didnt hint of any futher plans told her to go home and get well gain some weight!! she is still hoping to get back to work at the end of november (physciatric nurse), phasing in for 2 days a week, not too sure how that will go as her energy is really low still hopefully your dad has been precribed enzymes to help with digestion, a major problem for alot of whipple peeps, my sister has had to juggle alot over the past few months but the last time she saw her surgen he suggested 2 codine based pills 4 times a day along with diacalm also 4 times aday, THEN when she is eating 3 creon tabs, he seperated them out so it does not feel like she is taking 7 pills with every meal and so far so good its seems to be working, she had awful problems of eating and spending most of her time in the loo, fearing going out if she did she refused to eat, even stopped eating at home ( part of her fed up time), now chemo is finished she will try and eat less fatty foods, so far weight loss 70lbs!! she could afford it but its way to drastic  there are alot more good days for her now, we book for lanzeroti in feb, all the sisters & mom, ladies holiday :0), july the dads & kids are allowed and we have booked for greece, getting back to work and looking forward even now we are still learning, we may have been told in the begining but absorbing anything is a nono, she had been stage 3 and without the operation she had been told the likleyhood of making it to this xmas were slim, like yourself our grandparents lived to ripe old age, we had never experience cancer of any kind, av not always got the glazed look (am the youngest sister) just the shock of it all i struggled with friends/outsider's conversations, the panic, shock, hysterical feeling isnt so bad, av only just started meeting up with old friends myself getting back to some kind of normal GB Clare claretea Wed, 20 Oct 2010 00:00:00 GMT REgarding teh swelling in the legs, I had leg pumps that I was requried to use while in the hospsital  to prevent blood clots, hated them because it made it difficult to move in bed and could not get up without someone removing them.  Hope your dad doesn't have blood clots, he should be on a dieuretic for the fluid in legs if it is only fluid. I gained 20 lbs of fluid post op and it was all gone by the time I was discharged, but I was in 13 days.   keep an eye on the drainage, if it smells foul or has an infected like color, green or yellowish get him back to the doc.  101 seems like a high fever, my doc told me to me to get to  the hospital if my temp was 100.5 or more. I am with your dad, no one would sign up for whipple if they knew the full details prior to surgery... I said the same 7 or 8 days into the recovery, no one told me how difficult the surgery /recovery would be and I felt like I wanted to die... But we have SURVIVED and will live to be inspiration to others as they recover.  Your dad will do fine, just keep a very close eye on him.  and if I didn't mention this before, be sure he has metamucial capsules for stool softening, this needs to be a part of his life for ever... can't risk straining, and this is all natural fiber. my best to you and your family, Regards, Ray   RayLogu Mon, 04 Oct 2010 00:00:00 GMT Hi Ray, sorry I didn't check this sooner.  Well his drainage tube is out, but he needed a minor surgery to get it out.  The doctor says that the tube had a manufacturing defect on it that caused the end of the tube to split.  When they were pulling on it the split end was scratching my dads stomach (nice huh? as if he hasn't been through enough).  He came home on Thursday and feels much better at home.  Yesterday my mom had to call the doctor because he had quite a bit of drainage coming out the top of his incesion.    The doc just said to put warm compresses on it and go to urgent care if he gets a fever over 101.  His feet and legs seemed to be swelled right now, so we are not sure why that is?  I believe his nurse is coming out on Monday.  I see what you are saying about staying close with him, he does get depressed about this and he hates feeling so weak all the time.  He told me yesterday that he didn't realize how bad this whipple procedure would be and he is glad he didn't because he don't know if he would've went through with it.    I will tell my sister to add you, because it is nice talking with someone that know what we are going through...I've told my dad about you and he is glad that you are doing well....talk to you soon. Becky MrsFitz Sat, 02 Oct 2010 00:00:00 GMT Your Dad is remarkable, I am so glad he did not have the terrible problems eating that I had.  Most whipple patients do have the delayed gastric emptying, he one  very lucky guys!  Tubes coming out usually don't hurt, it must have had some tissue seal around it, hopefully this is a minor thing and won't be a setback.  Just keep an eye on the healing of the site where the tube comes out.  I had a puss pocket form at one of my drain sites, nothing serious, no pain, and it showed up only after going home,  but did require an antibiotic to clear up. 7 days and going home will be great, what they look for is eating and holding food down, bowels and bladder working and no fever.  If all is working right his recovery will be much better in the comfort of his home.  More than likely the doc will order a home health nurse, I had one come to the house once a day to monitor healing of drain tube sites, tape blood pressure, temperature and be certain everything was ok.  Part of the home health was also for monitoring my wife's administration of the tube feeding, so if your Dad doesn't require that maybe he will be ok with only follow up doc office visits. Sounds like he may be up for nomination for the "whipple" poster patient with  the fastest recovery! Stay close to your dad and comfort him through this, he will have periods of getting down a bit, but with love and support he will be ok. my best to you and your family!  Regards, Ray ps.  I can't find your sister lovebird, have her ask me to be added as a friend.     RayLogu Wed, 29 Sep 2010 00:00:00 GMT   Thank you so much Raylogu for your story.  My dad is doing great and already eating solid foods (mash potatoes, green beans, chicken, ect).  He didn't have a feeding tube.  They are just telling him to not over indulge and only eat until he feels full.  His surgery was Sept. 22 and they would have sent him home today (which we thought was way too early) , but they are having problems getting his drainage tube out, it's stuck?  The doctor tried to pull it out and my dad said it felt like the worse pain in the world and it felt like they were pulling his insides out.  So tomorrow they are doing a minor surgery to get that out....personally I am extremely upset at this because this should not of happened!  I mean hasn't he gone through enough already.  He tries to take atleast 3 walks down the hall a day.  Now from all the tugging on the drainage tube he is having pain from that.   Please add my sister as she is better explaining everything that is going on she is listed under "lovebird".  After they take the drainage tube out tomorrow they are saying that my dad can go home...this will only be 7 days after surgery, which doesn't seem right to me....I will keep you informed and I think that is wonderful that you are back to work! MrsFitz Wed, 29 Sep 2010 00:00:00 GMT This is such a rare cancer that I don't use the survival statistics as a reference, I use HOW DO I FEEL and what the docs say about how I am doing.   I am now 4 months post op, having had whipple surgery for an ampullary mass at age 77.  I was other wise health prior to this and this was my first hospital stay.   I started chemo (Xeloda/pills) and radiation 8 weeks post op.  The Xeloda did cause a build up toxic effect so had to stop 2 weeks and restart at a lower dose.  I did complete the full 6 weeks of treatment with radiation and the interrupted oral chemo and 3 weeks since last treatment and I am feeling VERY GOOD.  I had one lymph node positive, and the mass in the ampulla of vater was also positive.  Although the margins taken at time of surgery were negative, so the cancer cells were in the interior of the mass and lymph node.  I have been told by all of my treating physicians this is the toughest surgery of all.  And They all say I am doing best of any whipple patient they've seen. Keep a VERY close eye on your dad for signs of infection,  any swelling or warmness at sites of IV's and anything else that doesn't look quite right.  I was very fortunate to have a wonderful caring & careful staff for my care at Presbyterian Hopsital in Charlotte and made it through with no set-backs. I was fortunate that my wife was able to stay with me 24/7 during my 13 day hospital stay, it made life more comfortable to have her there for asisistance with emergency bathroom trips, knowing she was there made the wait on the nurses less stressful.  If someone can stay with your dad, I would highly recommend.  And he will no doubt need Depends undergarments to make the diahrrea less stressful.  the hospital size of one fits all with velcro creeps down to the knees when walking, best to get the depends with elastic / pull ups and have them on hand for when he starts eating and drinking and also when the feeding tube is put it he will also need them.  I went through 10 to 15 a day at times, I know that sounds like alot but the system goes through a shock when it is trying to gear back up to accept the tube feeding, liquids by mouth, etc. I did have to come home with a feeding tube due to delayed gastric emptying which is very common.  My best advice is NO food for dad from outside the hospital.  Eat only what he is given and be certain he gets the right tray, pay attention to whether he is on clear liquids or full liquids.  The prescribed diet is critical to starting the digestion back up since it is now sleeping from surgery.  Walking is excellent for him, the more he walks the better his recovery will be. And be prepared for an applaude when he passes gas, the hospital staff does celebrate passing GAS for the whipple patients.  I was able to return to work 7 weeks after surgery, worked through the treatment cycle and still working my usual 4 hour a day part time work week, nothing strenous, I design textile machinery.  I find keeping the mind active is good therapy for recovery  . you will find a wealth of caring people at this site and  find comfort in the sharing of information.  Feel free to contact me at my personal email:  topnotchplus@yahoo.com my very best to you and your family! regards,  Ray       RayLogu Tue, 28 Sep 2010 00:00:00 GMT On Sep 27, 2010 12:51 PM lovebird wrote: Sennekat, if you did have Chemo...which chemo treatment did you go with and was your lymph nodes effected?Lovebird, Hi! My cancer was confined to one site so I was not given chemo or radiation. Some docs think that the remedies, in some cases, can cause more harm than good. This is a controversial area as some suvivors opt for chemo and radiation no matter how clean their tumors. What do your surgeons and oncologists recommend? What do hospitals like John Hopkins recommend? Good luck, Sennekat. Sennekat Mon, 27 Sep 2010 00:00:00 GMT On Sep 27, 2010 9:49 AM MrsFitz wrote: Thanks so much for replying Sennekat.  This whole thing is just very scary for us.  The two lymph nodes were removed during surgery so they are out.  My dad walked further then he ever has yesterday (very shakey at the end) and will be getting the epidural out today.  Positive thinking is how we are all getting through this.   After the doctor thinks my dad is recovered well enough that is when he will go see the oncology doc to discuss chemo options....did you receive chemo?  if yes, how does that effect you?  My family has been very blessed and this is the first major surgery or cancer that we've had...so that is why we are all still in shock over all of this....Thanks again for replying and I will let my dad know that his life will feel normal again one day..MrsFitzMs. Fitz, So glad to hear that the nodes are out. Good job. Hopefully, your dad is up and walking around as much as possible. Also have him exercise his arms while in bed because when I was convalescing, both of my arms locked up when I started moving around again. I can't speak to chemo and radiation because I didn't have either. My tumor was about 3 cm and most of it was benign and the cancer had not traveled outside of the one site--no nodes and no margins. I have heard that folks get through chemo just fine...but check out which drugs he will be receiving and talk to folks who have had it. Let your father  know that ampullary cancer has a better survival rate than pancreatic. Try to keep him distracted, walk with him, play games with him, and get him as much info as possible. Cheers, Sennekat Sennekat Mon, 27 Sep 2010 00:00:00 GMT Sennekat, if you did have Chemo...which chemo treatment did you go with and was your lymph nodes effected? lovebird Mon, 27 Sep 2010 00:00:00 GMT Thanks so much for replying Sennekat.  This whole thing is just very scary for us.  The two lymph nodes were removed during surgery so they are out.  My dad walked further then he ever has yesterday (very shakey at the end) and will be getting the epidural out today.  Positive thinking is how we are all getting through this.   After the doctor thinks my dad is recovered well enough that is when he will go see the oncology doc to discuss chemo options....did you receive chemo?  if yes, how does that effect you?  My family has been very blessed and this is the first major surgery or cancer that we've had...so that is why we are all still in shock over all of this....Thanks again for replying and I will let my dad know that his life will feel normal again one day..MrsFitz MrsFitz Mon, 27 Sep 2010 00:00:00 GMT 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....Mrs. Fitz, Try not to worry so much. I am a 4.5 yr ampullary cancer survivor who has had a whipple procedure. The main thing is how good your docs and hospital are in the area of GI oncology (ampullary/pancreatic). You should concentrate on the two positive lymph nodes to get them gone. Your dad will get well and has a good chance of surviving if chemo/radiation can remove positive nodes. Survival after a whipple can be normal with good surveillance and follow-up care--cts, etc. Sennekat Sennekat Sun, 26 Sep 2010 00:00:00 GMT 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.... MrsFitz Sat, 25 Sep 2010 00:00:00 GMT