CancerCompass message board discussion started by london on 12/19/2007 http://www.cancercompass.com/message-board/message/all,19000,0.htm Wed, 23 Jul 2008 00:00:00 GMT Wed, 23 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was just diagnosed with periampullary cancer Nov 15. I had Whipple surgery Nov 20. Pathology showed that the origin of my cancer was in the ampulla itself. Of 21 lymph nodes removed, I had cancerous cells in three. Other than that I showed a wide margin of no cancer. I just saw the oncologist Dec 17 and am scheduled to start chemo with Gemcitabine on Jan 10. for a period of 4-6 months, three weeks on w/one week off. Oncologist wants to do chemo alone with no radiation. Feels that there's a chance of lymphovascular invasion which the chemo would take care of. Says radiation is for localized treatment and since I have very wide clear margins, it's not called for. Radiation treatments may also interfere with chemo treatments which I really need because of the lymph involvement. Does this make sense to anyone? My journey with all of this just started Oct 31 with a belly ache, so I feel like I've been in a whirlwind! I have had a great recovery from my surgery and am actually feeling fairly good. I would appreciate talking to anyone with knowledge or first hand experience with ampullary cancer. Since this is such a rare cancer, it's tough to find good information on it. Thanks in advance for any responses! I am being treated at the James Cancer Clinic at OSU Hospital in Columbus, Ohio.  london Wed, 19 Dec 2007 00:00:00 GMT Patient London, I don't know if there is enough room on this message board to respond to you, so if you'd like, email us at: --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--.  My 53 yr old wife, Sun, has ampullary cancer. She had been feeling tired, weak, etc for a while. Finally on 22 Oct, she went for some blood tests. Within a day or so, her fever peaked at 104.6. She had cold chills and shakes. She jaundiced very badly.  She underwent a week of tests in the Cape Canaveral Hosp in Cocoa Beach, FL with the team of surgeons adamantly insisting she must have gallstones, although none showed up in any of the tests (ultrasound, ECRP, MCRP,MRI, CT Scan).  I asked several times if they were considering a tumor.  Right up until the day before surgery, they continually blew me off, as she does not meet ANY of the cancer criteria (smoker, drinker, family history, overweight, etc.). The day of surgery they told us they thought she had a lump but still didn't believe it was a tumor.  Post surgery, the doc told me he removed an infected mass from her the ampullary of her pancreas and sent it out for analysis, but was sure it was not a tumor.  However, during surgery, as they could not discount it being cancerous, they did the Whipple procedure.  All her lymph nodes were clean, as was her liver. Results of the mass came back stating it was malignant. I bought a huge stack of books on cancer, and found nothing on ampullary cancer. She was in intensive care for 5 days and in a post-surgical ward for another 5.  Total time in the hospital was almost 3 weeks. She is still suffering serious post-surgery problems. A puss blister surfaced on her surgical cut line a week after she was released from the hospital. Her surgeon cut it open and it practicaly geysered from so much. He patched her up with several 4x4" gauze pads and sent her back home. By the time we got home, puss had soaked through all the bandages, her clothes, and was running down her legs and dripping on the floor. What a mess. The drainage has slowed to leave a 3" spot on her bandage every 12 hrs.  She has no energy.  She is still losing weight. She was 105 post surgery, and is now down to 91 lbs. She still has internal pain. Doc is still taking a wait and see attitude, although last week he discussed cutting her open again to see if he can find a problem. He ran another CT Scan, and based on it, said we will continue to wait. Sun asked him if that meant she was good.  He said, no, you are not good...let's just say you are OK. So we continue to wait. Meanwhile, we have seen 2 oncologists. Local ones are only general practicioners. Both have given differing opinions of follow on treatment.  One wants to give Gemcitabine and radiation on a 3 week alternating schedule for 6 months.  The other wants to give Gemcitabine only as he feels her margins are wide and clear. He said the Gemcitabine and radiation counteract each other so cannot be given simultaneously.  He also said he will give whatever follow  on treatment we desire, for example, if we want to use the old style chemo with radiation, he will do that.  He saidnow that we have differing opinions,  he would prefer we get an opinion from a cancer center specialist, so has referred her to Moffitt Cancer Center in Tampa for a consult.  In either case, no follow on treatment can begin, as her present surgeon will not allow them to implant the port in her neck until her post-surgical problems are corrected. So we wait.  I have strongly suggested different a different surgeon and another opinion, but Sun wants to stick with this one. We are scheduled to go to Moffitt Cancer Center on 27 Dec. She has another post-surgical follow up appointment this afternoon, although I doubt anything will come of it as she is still draining puss. And by the way, it looks like when this is all over with, she will have a second belly button, from where the drainage hole has been trying to heal, but the puss is keeping it open. Hopefully this will all post. If you'd like, I'll keep you posted on her progress. However, if no others on this site express an interest in ampullary cancer, perhaps we should correspond directly. We are also interested in the details of your surgery and progress, as well as the follow on treatment decision you make. If you would prefer to respond privately, please do. We wish you well and pray for your full recovery. George & Sun Cole, Cocoa Beach, FL Rising Sun Thu, 20 Dec 2007 00:00:00 GMT London, We had hoped to hear back from you by now of our rather lengthy email of Sun's amupllary cancer. In the event you are still interested and reading this message board, the following additional info is provided. We saw 2 G.I. specialists at the Moffitt Cancer in Tampa on Thursday. They provided an entirely different treatment proposal. Even though Sun has wide clear margins, no blood vessels were involved, and all 13 lymph nodes tested were clean, there was some attachment to nerves in the area. This is supposedly another method of the cancer may metasize through the body. Based on this, they recommended she undergo the old style of cancer treatment, comprised of 5-Fluoracil chemo and simultaneous radiation for 5 weeks.  The radiation would be directed to the area where the tumor had contact with her nervous system. But the radiation cannot start until her belly drainage has stopped. She had the Whipple procedure on 31 Oct and still has fluid draining from a belly hole. They said it is not infection drainage, as she has no fever, so must be fluid being produced by one of the organs involved in her Whipple procedure. As our 2 local non-specialist oncologists have both recommended Gemcitibine (either by itself or staggered with radiation), I suggested she take several cycles of that intervenously until her belly heals, then switch to the 5-FU/radiation combo for 5 weeks, then switch back to Gemcitibine for the remainder of the 6-month period.  At some point in the first Gemcitibine treatment, her belly drainage should stop and belly heal so they can surgically implant the port for further chemo treatment. The specialists said there is no data to support which chemo/radiation treatment is more effective, and if we want to take the more agressive approach that I just described, they would suggest that to her local oncologist. However, Sun still is undecided which path to take, as according to the specialists at Moffitt, the 5-FU is a more agressive chemo, and will most likely result in side effects including hair loss. Other side effects such as mouth sores, nausea, and diarrea, may be mitigated through other drugs, but the hair loss is pretty much imminent.  Sun's next appointments with her local oncologist and surgeon are next Wednesday and Thursday. Hopefully she will have made her mind up by then which route to take.The specialists also said although ampullary cancer used to be extremely rare, they are now getting about 1 new case per week of it at the Moffitt center.  They also said the Gemcitibine treatment alone is the primary treatment for pancreatic cancer, and were adamant that ampullary cancer should not be confused with pancreatic, as they are completely different. This contradicts what our local oncologists have told us as they have said the only difference is the location of the tumor. The Moffitt specialists said this is not a true statement, and we should not assume that treatment for ampullary and pancreatic cancers should be the same.Again, good luck to you and hope you will keep us posted as you are the only other individual we have found with ampullary cancer.Sun & George Cole Rising Sun Sat, 29 Dec 2007 00:00:00 GMT I sent the following message to --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- on Dec 20th. Did I get the email address wrong? I've been worried that I haven't heard back from you! You can email me directly at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . This note just really tells what happened to me and what course I'm taking. It sounds like you're making some progress with your treatment. I'm getting ready to leave right now, so will respond to your latest message later. Glad you got back to me!      I just previewed this reply and it has all the "jibberish" after my reply message and the copy of the message I sent you on the 20th. And I can't seem to fix it. So just scroll down until you get to the first message I sent. Sorry about that!   YAHOO.Shortcuts.hasSensitiveText = true;YAHOO.Shortcuts.sensitivityType = ["sensitive_news_terms", "adult"];YAHOO.Shortcuts.doUlt = false;YAHOO.Shortcuts.location = "us";YAHOO.Shortcuts.lang = "us";YAHOO.Shortcuts.document_id = 0;YAHOO.Shortcuts.document_type = "";YAHOO.Shortcuts.document_title = "";YAHOO.Shortcuts.document_publish_date = "";YAHOO.Shortcuts.document_author = "";YAHOO.Shortcuts.document_url = "";YAHOO.Shortcuts.document_tags = "";YAHOO.Shortcuts.annotationSet = {"lw_1198970497_0": {"text": "Columbus","extended": 0,"startchar": 1267,"endchar": 1274,"start": 1267,"end": 1274,"extendedFrom": "","predictedCategory": "PLACE","predictionProbability": "0.728985","weight": 0.7239,"type": ["shortcuts:/us/instance/place/ambiguous"],"category": ["PLACE"],"context": "the best GI drs in Columbus That dr then referred me","metaData": [ { "geoArea": "518.477","geoCountry": "United States","geoCounty": "Franklin","geoIsoCountryCode": "US","geoLocation": 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"97546169";YAHOO.Shortcuts.hostSpaceId = "97546168";Hi Gary & Sun!   It was so nice to hearfrom someone with this same illness. Although I feel so badly that Sunhas had to go through  so much more than I have. I just started havingabdominal pains especially after eating in mid October. I went to myprimary dr Oct 30 who thought it was gall stones. He sent me for anultrasound that same afternoon which showed a stricture at the end ofthe bile of duct. He also did blood tests which showed elevated liverenzymes. I had had my yearly physical Sept 19 and my liver enzymes wereperfect. That next morning I had an MRI which showed the strictureagain, but no gall stones or tumors. That weekend I became jaundiced.On Nov 5 I had a ERCP. That dr said he saw nothing suspicious andthought it was papillary stenosis. He put a stent in the bile duct, andin two days I had no jaundice. He also took scrapings from inside thebile duct, but said he expected them to be normal. That next day whenpathology came back, the GI dr called to say that the scrapings showedmalignant cells. What a shock all this was. I have to say that I hadgone to my primary dr for 20 years so we had a personal relationship.He acted so quickly and referred me to one of the best GI drs in Columbus.That dr then referred me to the top gastrointestinal surgeon inColumbus who had performed 42 whipple procedures last year. I talked tomy primary dr about the surgeon (after all, you're putting your life inhis hands) and he said that he would be the surgeon that he would takehis wife to if the same thing would happen to her. My first appt withthe surgeon was Nov 15th and my surgery was the 20th. He said thesurgery went "text book" perfect and only took 3 1/2 hours. I did sowell in recovery that I didn't even have to go to ICU. I had liquids 6days after surgery and solids in 8 days. I was discharged on the 9thday. I've only had two bouts of vomiting. Once in the hospital and oncemy first night home. I'm eating well, although smaller amounts than Iused to. The nauseous feeling I've had I compare to that sick feeling Iexperienced early on in my pregnancies, although that is getting betterall the time. I still have some pain getting up and down, but nothingsevere. I know I am very fortunate. I've lost about 9 pounds since mysurgery which I think is pretty good. Compared to Sun, I feel like I'vereally cheated the odds. I am older (60), and I weighed 160 going intosurgery. I think the difference might be the drs that I've had. I woulddefinitely see another surgeon if I were you. I also have to tell youthat the worst experience I've had is when they took the drainage tubesout of my abdomen. Mine were in 3 weeks and 2 days and that wasprobably the worst pain I've ever felt when they took them out. If Iever had to have that done again, I would definitely want to besedated.  The best  advice I can give is a positive attitude. I'm luckyto have a huge support group of family and friends that have helpedtremendously. Two of my best friends have recently gone thru cancertreatment and they're the ones that I can really rely on since they'vebeen through this. We just had our 6th grandchild born Dec 9, which wasmy first outing since surgery. Even though it's not always easy to findsomething to laugh about, try. I mean ampullary cancer! C'mon! Who inthe world gets ampullary cancer! My friends say that they would expectme to do something weird! Sun, hang in there. I'm so sorry that you'rehaving to deal with so much more than I did. But you just take each dayat a time, and if you nap just 5 minutes less than you did yesterday,that's improvement. If you can eat one bite more, that's improvement.And if you can sit up just 5 minutes more, that's improvement. Countyour blessings. Laugh at something stupid. Take a phone call when youdon't feel like talking to anyone. You must have a wonderful husbandfor getting on this message board for you. Don't feel guilty forrelying on him. Use his strength. Be open to visiting another dr. I amhere to listen to you when you feel like writing. I have a feeling wecan help each other. And my name is Nancy Chapman! London is my hometown that we moved back to five years ago. It's a small town about 25 miles west of Columbus, Ohio. I have 3 grown and married children. Our son lives in Westerville, a suburb of Columbus and about 45 minutes away. Our oldest daughter lives in Dayton, also about 45 minutes away. And our other daughter lives just outside of London,about 15 minutes away. We actually babysit her 6 month baby! My husbandis the one who does all the work, I just sit and hold him occasionally,but what a joy it is just to do that. There's nothing like a baby tomake you smile. My husband, Mike, and I have been married 36 years. Heactually just retired October 31st! I don't know how we would havehandled all of this if he would have still been working. I count eachday as a blessing and a gift. So keep taking baby steps, and we're bothgoing to lick this. I look forward to hearing from you. var callCount = 0;function rmvScroll( msg ){if ( ++callCount > 10 ) { msg.style.visibility = "visible"; }if ( callCount < 50 && ! imgsDone( msg ) ) {setTimeout( function() { rmvScroll( msg ); }, 200 );return;}var delta = msg.offsetHeight - msg.clientHeight;var newWidth = 0;var newHeight = 0;delta = ( isNaN( delta )? 1 : delta + 1 );if ( msg.scrollHeight > msg.clientHeight ) {newHeight = msg.scrollHeight + delta;}delta = msg.offsetWidth - msg.clientWidth;delta = ( isNaN( delta )? 1 : delta + 1 );if ( msg.scrollWidth > msg.clientWidth ) {newWidth = msg.scrollWidth + delta;}msg.style.overflow = "visible";msg.style.visibility = "visible";if ( newWidth > 0 || newHeight > 0 ) {var ssxyzzy = document.getElementById( "ssxyzzy" );var cssAttribs = ['#' + msg.id + '{'];if ( newWidth > 0 ) cssAttribs.push( 'width:' + newWidth + 'px;' );if ( newHeight > 0 ) cssAttribs.push( ' height:' + newHeight + 'px;' );cssAttribs.push( '}' );try {ssxyzzy.sheet.deleteRule( 0 );ssxyzzy.sheet.insertRule( cssAttribs.join(""), 0 );} catch( e ){}}}function imgsDone( msg ) // for Firefox, we need to scan for images that haven't set their width yet{var imgList = msg.getElementsByTagName( "IMG" );var len = ((imgList == null)? 0 : imgList.length);for ( var i = 0; i < len; ++i ) {var theImg = imgList[i];if ( ! theImg.complete && "undefined" != typeof theImg.naturalWidth && theImg.naturalWidth == 0 ) {return false;}}return true;}var msg = document.getElementById( "message1643798146027546232780044543103961017494069" );if ( oBw.agt.match( /gecko/ ) == "gecko" ) { if ( msg && "undefined" != typeof msg ) { rmvScroll( msg ); }} else { msg.style.visibility = "visible"; }DeleteReplyForwardMove...Previous| Next| Back to MessagesSave Message Text | Full Hea london Sat, 29 Dec 2007 00:00:00 GMT Hi Mary, Just got your reply posting to my first response. Glad to hear from you. I printed your response and Sun is reading it right now. We have 4 granddaughters aged 2-7. Three of them live 2.5 hrs away, about a 15 minute drive from Moffitt Cancer Center in Tampa. They spent Christmas Eve and Christmas Day with us. The other lives in Monterrey, CA. She and our other daughter were here the week before Christmas. Sun turns 54 next Thursday. I am 55. We celebrated our 34th anniversary on Thursday, the 27th of Dec. She works at the Patrick AFB Child Development Center. I work for NASA at Kennedy Space Center. I have a very liberal workday, and have taken quite a bit of time off for her hospitalization and recovery. For the first several weeks, I was home continually, then gradually went back for part days. I would go in at 4:30 in the morning and be home by 9:00 to spend the day with her. That seemed to work quite well. I'll probably do something similar when she starts chemo/radiation. I just responded to another cancer patient who has not yet had his Whipple. It is scheduled for next week. All he said is his tumor is outside the head of his pancreas, but he didn't specifically say it was ampullary. He may not even know at this point. You may want to check his posting and add to my response as you and Sun appear to be at opposing ends of the Whipple procedure spectrum. Yours seems to have been fairly mild while hers was not, and she has still not recovered even though hers was almost 3 weeks before yours. Hope to keep in touch, even though this message board deletes our email addresses so we cannot correspond directly. George & Sun. Rising Sun Sun, 30 Dec 2007 00:00:00 GMT Nancy, OOPS! I called you Mary in the last posting. My mistake.Regards, George & Sun Rising Sun Sun, 30 Dec 2007 00:00:00 GMT Hi Nancy,Hope all is well.  Just responded to another woman on this site who's brother is getting the Whipple procedure today.  You may want to contact her as well.  Hope you are continuing to improve.  Sun's still got puss draining from her belly, but started chemo through the wrist on Wednesday.  For now it will be a once a week therapy for 3 months, then will switch to 5-FU and radiation for 5 weeks, and finally switching back to the new stuff again to finish out her 6 months of therapy.  Take care.  our thoughts and prayers are with you.  George & Sun Cole  --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Rising Sun Sat, 05 Jan 2008 00:00:00 GMT Hi my name is Michele and I am the caregiver.  My husband is 47 and underwent the Whipple Procedure on 8/22/07 for Ampullary Cancer.  This has been extremely scarey and unexpected in our life as well as your own I'm sure.  I'm looking for some suggestions or to see if anyone is experiencing the same post surgerical complications that he is.  In brief:  After the whipple procedure they found that it also metastisized into the lymph nodes.  They only removed 6 but out of the six 2 were cancerous.  The procedure went well and he was only in the hospital for 10 days.  He did have a slight infection in his incision but that reopened it and packed a small part until it healed.  Approximately 2 weeks after we were home he developed a staph infection in that small part of the incision.  He was hospitalized for 1 week and sent home on IV antibiotics.  While at home he contracted another staph infection in the blood stream (MRSA).  This delayed his chemo treatments.  Finally in October he began Chemo gemcitabine and taxol along with radiation at the same time for 5 weeks.  Everyday was radiation and once a week he had chemo treatment.  By about the 4th week of radiation he began having extreme upper abdominal pain and distention.  They want to start another chemo treatment which is oral  xelodel and tarceva but they are trying to get his pain under control.  This chemo treatment is suppose to be for 6 months.  He just had an endoscopy done today and it shows the stomach not emptying and barrets esophagus.  He is on oxycodone, oxycoton, steroid, atavan, klonopin, creon, and protonix.  Does anyone take this much medication?  They say that his stomach may not be emptying because of the pain medication but he can not bear to think of stopping his pain meds.  His appetite is fine and he can eat full meals with no problem.  It's funny but you would think with the amount he is eating he would be gaining weight.  I sure would and have just trying to encourage him in the beginning.  I guess I'm just looking for similarities with someone to know he is okay or going to be okay.  I never seem to get clarity from doctors.  I'm told it is considered pancreatic cancer and yet I was told by another doctor to consider it the best case senario for pancreatic cancer.  I'm just wondering if this is going to end or get better.  He has a pet scan scheduled for 1/22/08 and then sees the radiologist for results on 1/25/08.  Anyone's input would be extremely appreciated.  Thanks for listening.  Michele  Mich1031 Mon, 07 Jan 2008 00:00:00 GMT If I can advise him to see a dietitian - it is so important to be emptying his bowels... Having FULL meals might not be such a good idea right now - really good, healthy food THAT MOVES through the system along with ways to help it all move will make such a difference - doctors usually say Fiber or Prunes, or stool softeners...  and even with those, what he's eating (along with pain meds) can mess up the whole thing.  Also, if foods are not digested properly, this adds to other constipation and health issues.  I know the doctors say don't take enzymes (because they want the body to naturally kick in) but in my opinion that's bull.  Isn't his body fighting hard enough?  After my father's Whipple he suffered for years with abdominal pain and bowel issues - he started taking a natural enzyme with every meal and WHAT A DIFFERENCE it made for him!  These suggestions don't solve any of his problems but could help and any help with comfort at this time is so necessary.  God Bless and the best to you and your family.MIchelle  Garysdaughter Wed, 16 Jan 2008 00:00:00 GMT I'm 22 years old, and i just had a whipple opeartion 4 month ago. I had ampullary cancer, it sound uncommon, yah my dr's were shocked due to my age, also due to my health, im a healthy men and  i never got sick in my life this is the frist thing  poped up in my life. I had 14 lymp nodes removed none of them were cancers and they were free of tumors. My dr told me that i had a stage 1 ampullary cancer., and i did not need to go for chemo or radiation. Is ampullary cancer the same as pancreatic cancer or not, whats the difference?I was just wondering after this kind of operation  can you be cured, is their any chance of recurrence?  what is the survivale rate after being diagonsed  for stage 1?Please any one who more information about this type of cancer could get me any helpfull infromation on it.                                                          thanks   gazalymo Sat, 19 Jan 2008 00:00:00 GMT I am 45 year old female with ampullary cancer.  I had gastroparesis after my whipple.  Gastroparesis is basically a paralysis of the stomach.   It doesn't empty.  I would throw up any little thing I ate.  I took Reglan for it and still take a partial dose.  Sometimes I still feel nauseated.  They diagnosed this with an upper GI with barium (sp?).  My oncologist wants me to watch for that kind of symptom and pain because it could mean that there is a kink somewhere from all that reorganization of organs that takes place with this surgery.  brotzdesart Thu, 14 Feb 2008 00:00:00 GMT I had a whipple in Nov 2005 for amullary cancer. I was told a wide margin was taken but it has returned now in the form of a fast growing tumor.The Calgary doctors said gemsidabene would not work on ampullary cancer it was only good for pancreactic cancer and i should accept my fate.I flew to M D Anderson hospital in Houston and they said they have had 505 success rate with a double dose of Xeloda and oxylaplatin chemo. I am into my fourth treatment and the tumor marker has dropped from 158 to 48, a strong sign that the chemo is working.I am confident that M D Anderson in Houston is the No1 cancer center in the world and I would urge anyone else in my position to take a 2nd opinion there, even though I am paying for all the treatment myself and I can ill afford this,. I am determined to beat this and my prayers go out to everyone who is affected by this directly or indirectly Lots of love to all John Calgary canada Hutchie Fri, 29 Feb 2008 00:00:00 GMT John,We are so sorry to hear of your situation.  Since our initial posting, Sun's diagnosis was changed.  Pathologists at the Moffitt Cancer Center in Tampa, FL have decided that since her tumor was attached to her bile duct, it should be classified as pancreatic instead of ampullary.  Doesn't change our approach, however.  She has received 2 cycles (months) of gemcitabine, and next week starts radiation and 5-FU for 6 weeks.  We will be driving 4 hours back and forth to Moffitt every day for the treatment.  Then she goes back to gemcitabine for the remainder of the 6 months of treatment.Please keep in touch.  We will be thinking of you.George & Sun C--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Rising Sun Fri, 29 Feb 2008 00:00:00 GMT  On 12/29/2007 Rising Sun wrote:London, We had hoped to hear back from you by now of our rather lengthy email of Sun's amupllary cancer. In the event you are still interested and reading this message board, the following additional info is provided. We saw 2 G.I. specialists at the Moffitt Cancer in Tampa on Thursday. They provided an entirely different treatment proposal. Even though Sun has wide clear margins, no blood vessels were involved, and all 13 lymph nodes tested were clean, there was some attachment to nerves in the area. This is supposedly another method of the cancer may metasize through the body. Based on this, they recommended she undergo the old style of cancer treatment, comprised of 5-Fluoracil chemo and simultaneous radiation for 5 weeks.  The radiation would be directed to the area where the tumor had contact with her nervous system. But the radiation cannot start until her belly drainage has stopped. She had the Whipple procedure on 31 Oct and still has fluid draining from a belly hole. They said it is not infection drainage, as she has no fever, so must be fluid being produced by one of the organs involved in her Whipple procedure. As our 2 local non-specialist oncologists have both recommended Gemcitibine (either by itself or staggered with radiation), I suggested she take several cycles of that intervenously until her belly heals, then switch to the 5-FU/radiation combo for 5 weeks, then switch back to Gemcitibine for the remainder of the 6-month period.  At some point in the first Gemcitibine treatment, her belly drainage should stop and belly heal so they can surgically implant the port for further chemo treatment. The specialists said there is no data to support which chemo/radiation treatment is more effective, and if we want to take the more agressive approach that I just described, they would suggest that to her local oncologist. However, Sun still is undecided which path to take, as according to the specialists at Moffitt, the 5-FU is a more agressive chemo, and will most likely result in side effects including hair loss. Other side effects such as mouth sores, nausea, and diarrea, may be mitigated through other drugs, but the hair loss is pretty much imminent.  Sun's next appointments with her local oncologist and surgeon are next Wednesday and Thursday. Hopefully she will have made her mind up by then which route to take.The specialists also said although ampullary cancer used to be extremely rare, they are now getting about 1 new case per week of it at the Moffitt center.  They also said the Gemcitibine treatment alone is the primary treatment for pancreatic cancer, and were adamant that ampullary cancer should not be confused with pancreatic, as they are completely different. This contradicts what our local oncologists have told us as they have said the only difference is the location of the tumor. The Moffitt specialists said this is not a true statement, and we should not assume that treatment for ampullary and pancreatic cancers should be the same.Again, good luck to you and hope you will keep us posted as you are the only other individual we have found with ampullary cancer.Sun & George ColeSue & George, Afer watching the postings in this site for over a year, I have finally found someone else who has had 5-FU and radiation at the same time.  I often wondered if my husband's doctor was on the right track when I was seeing everything but 5-FU and radiation which was given at the same time for 6 weeks. My husband had a whipple done 1 1/2 years ago and his ampullary cancer was stage 3 with 2 lymph nodes having cancer out of 21. The only symptoms he had was a big hard tummy but being a man, he would say it was all muscle. Needless to say, it was a large tumor which produced a complete blockage in the duodenum. He had no jaundice. He just had the belching and flatuas.  He was being treated for GERDS at that time. January 30th, 2008 he had a catscan from the neck down to the groin. At this time, they see no reoccurance.  He will continue to receive catscans to monitor whether it has come back. We continue to pray it doesn't. By the way, my husband had longer thick hair.  He did lose some of hair but he kept most of it.  It was not noticeable that he had lost any. He did lose some of his body hair tho.  Not sure if this is unusal but the doctors told him he wouldn't lose any with this chemo. He did have the sores in his mouth, general fatigue but did not throw up. Towards the end of chemo and radiation, he did say that alot of food didn't appeal to him or just made him quesey. Every morning I wake and thank our good Lord I have my husband for another day. Life is so very precious. Isn't it?God bless all of you! Jo  Minipinwheel Thu, 13 Mar 2008 00:00:00 GMT Google Pan can for the website.  Good info on ampullary cancer there.   Tho it is categorized as Pancreatic , it has different outcomes.  Worth the read.   More hopeful than Pancreatic cancer. I am 15 months cancer free.   Feeling good and enjoying life.  dcnbama Fri, 28 Mar 2008 00:00:00 GMT Go to Miami Jackson Memorial and see Dr. Pasquale Benedetto.He's my savior oncologist305-243-4909 His secretary is Kim. CAROLYN9776 Thu, 03 Apr 2008 00:00:00 GMT  On 12/19/2007 london wrote:I was just diagnosed with periampullary cancer Nov 15. I had Whipple surgery Nov 20. Pathology showed that the origin of my cancer was in the ampulla itself. Of 21 lymph nodes removed, I had cancerous cells in three. Other than that I showed a wide margin of no cancer. I just saw the oncologist Dec 17 and am scheduled to start chemo with Gemcitabine on Jan 10. for a period of 4-6 months, three weeks on w/one week off. Oncologist wants to do chemo alone with no radiation. Feels that there's a chance of lymphovascular invasion which the chemo would take care of. Says radiation is for localized treatment and since I have very wide clear margins, it's not called for. Radiation treatments may also interfere with chemo treatments which I really need because of the lymph involvement. Does this make sense to anyone? My journey with all of this just started Oct 31 with a belly ache, so I feel like I've been in a whirlwind! I have had a great recovery from my surgery and am actually feeling fairly good. I would appreciate talking to anyone with knowledge or first hand experience with ampullary cancer. Since this is such a rare cancer, it's tough to find good information on it. Thanks in advance for any responses! I am being treated at the James Cancer Clinic at OSU Hospital in Columbus, Ohio. I just read your message today. I am cancer survivor for 17 years. I was dx ampullary CA and had whipple op. I didn't have chemo or radiation. They found a 3cm large cancerous mass. There was no Mets.Good luck to you. If you have any questions please write back joytothe world Wed, 23 Apr 2008 00:00:00 GMT Hi London!  My name's Kim, I'm 42 years old, and I was diagnosed with ampullary cancer on March 5th of this year.  I had the Whipple procedure performed exactly five weeks ago today at University Hospital in Cleveland, Ohio.  My surgeon was one of the best in the city, and I actually came home after 8 days in the hospital on a liquid/soft food diet.  No feeding tube thank goodness!  I've experienced alot of nausea and pain; but overall I'd say I'm recovering quite well.  I also had the cancer in a few of my lymph  nodes and actually meet with my oncologist tomorrow.  I'll be happy to share any information I can with you.  Like you, I was shocked when I was diagnosed.  Had been having abdomenal pain and my gastro doctor did an endoscopy and thankfully found my tumor.  I know that they consider ampullary cancer a bowel cancer, not pancreatic.  My surgeon said I will have to have yearly CAT scans to make sure the cancer hasn't relocated to another organ, but after five years of clean scans, they consider you cancer free and cured.  Will let you know what my course of treatment will be.  I hope you're well; take care.  Bomberlover84 Tue, 29 Apr 2008 00:00:00 GMT