CancerCompass message board discussion started by brotzdesart on 2/5/2008 http://www.cancercompass.com/message-board/message/all,20657,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with ampullary cancer June 27 of 07.  I underwent  whipple surgery July 12 at UI hosptials in Indianapolis.  The Doctor who performed my surgery was trained at Johns Hopkins and performs whipples several times a week.  Based on the information we researched - it was best to get someone who has done hundreds of these operations because of the high risk of complications associated with this surgery.  40%.  I was an unlucky 40% and was in the hospital, in and out of the ICU three times and ended up in rehabilitative care to learn to walk, dress, and eat again.  Over nine weeks total hospitalization. As a result I had to wait until healing was complete for adjuvant chemoradiotherapy.  Five weeks prior to Christmas, I went to radiation five days a week and in weeks 1, 3, and 5,  I had 5FU for 72 hours.  I tolerated this regimen amazingly well.  I only had some nausea and some loose stools.  No hair loss, appetite loss, mouth sores, or abdominal pain.Now, because I want to throw everything I can it, we are doing a course of gemcitabem (sp?).  This will be 6 months of infusions.  Three weeks on, one week off and start again.  This may cause hair loss.  If my insurance would approve it, I would next throw FOLFOX at it, but they won't.  I was told that with ampullary cancers - 25% are related to pancreatic cancers and 75% are related to intestinal cancers.   My doctor is very aggressive and I appreciate that so we are trying to cover all bases.I will write more later.  My last scan three weeks ago was clear.  So at seven months post surgery I am doing good.  BUT I did have one lymph node involved, perineural invasion and lymphovascular invasion with a poorly differentiated cell.  Those things are not good. I am doing everything in my power to learn about this cancer and what I can do to fight it!Check out www.pubmed.com for the most up to date articles on ampullary cancer (of which there is little). brotzdesart brotzdesart Tue, 05 Feb 2008 00:00:00 GMT Did they told you what stage was you cancer, and what are the chances of it coming back, please let me know because i had a stage 1 ampullary cancer. thanks gazalymo Sun, 10 Feb 2008 00:00:00 GMT I am stage II A.  Chances of recurrence for me are 40-50% brotzdesart Wed, 13 Feb 2008 00:00:00 GMT I have stage II A.  Chances of recurrence are 40-50%.  brotzdesart Thu, 14 Feb 2008 00:00:00 GMT I am 47 yrs old and had the whipple procedure done Feb 8 of this yr.Ihad stage 2 ampullary and 1 lymph node involved. I was off the feeding tube 3 wks after surgery and tolerating food very well. I will have 3 remaining tubes taken out at 6 wks checkup and will then start 6 weeks of radiation and chemo(Orally).I didnt ask my doctor what my chances are because only God knows when he's ready for you.I live 1 day at a time and dont believe in giving up. I had colon cancer (stage 3) four years ago and am in remission at this time. I do believe that God doesnt give you what you and HE together cant handle. Dont give up and may God Bless You and your family. Wanda47 Sun, 09 Mar 2008 00:00:00 GMT Thank you for your words of encouragement. I faith, good medicine and will power will get me through this. brotzdesart Mon, 10 Mar 2008 00:00:00 GMT I am cancer free 15 months now.   Had ampullary cancer stage 3.   Pretty much normal again.  I read some encouraging info about ampullary cancer on the Pan can website regarding recurrence.  The main thing I learned.. live fully each day and try not to dwell on what might happen.  Relationships were always important to me but even more so now.   Many asked me what would be things I would want to do... you know.. like some say .."I want to jump from a plane, go here or there".  For me.. I wanted to get back in touch with some friends that I lost touch with and get closer to my family.   Of course I have taken a few trips.. but not out of the USA.  I have no desire to sky dive or bull ride.  However, I do think Tim McGraw's song, "Live like you were dying" is quite applicable.Keep positive as possible and realize there will be days when you feel a bit down about things.  It passes.Best to all of you. dcnbama Fri, 28 Mar 2008 00:00:00 GMT Hello to all.  I am a 42 year old female diagnosed March 5th with ampullary cancer and proceeded to have the Whipple surgery on March 25th at University Hospitals in Cleveland, Ohio.  My surgeon was phenomenal.  I was only in the hospital eight days, and was even on liquids/soft foods when I went home.   I was diagnosed stage 2 as it was found in a couple of lymph nodes.  I meet with my oncologist tomorrow.  Even though I seem to have done well after the surgery, I still experience ALOT of pain and nausea, along with occasional constipation, and my post menstrual body has decided to throw in some hot flashes for good measure.  I have good days and bad days, as I'm sure you all do; I just don't know how to cope with this yet.  It still doesn't seem real to me.  I'm so scared, but I can't let my husband and kids see me being an emotional wreck; they'll be as strong or as weak as I am.  I do alot of crying alone at night, I just don't know how to handle this.  I'm hoping this website will help me to be able to deal with this a little better.  Thanks for listening and good luck to everyone. Bomberlover84 Tue, 29 Apr 2008 00:00:00 GMT Hi!I  believe you can rest assured that you are experiencing normal things post surg that will improve over time.   Be sure to keep the lines of communication open with your surgeon and his nurse if he has one.   Validate things with them as they come up as they are the experts.It is scarey and you always wonder about it coming back but try to enjoy your health.  Be patient in your recovery... don't rush it.  I know that is easy to do.   I would encourage you to talk to your family... they need to know honestly , how you feel...that is the best way for all of you to support each other. Take care and best wishes to you.Diana  16 mo survivor of ampullary cancer  dcnbama Tue, 29 Apr 2008 00:00:00 GMT Hi Diana, and thanks for responding to me.  I think you're probably right about talking to my family----I guess I just don't want to scare them anymore than they already are.  I guess I feel like I'm an emotional burden and worry to them, and that is the last thing I want to do to them.  All three of my children are in college and that's where I want their focus to stay--not on me.  I think I will make an effort to be more open with them regarding my feelings, but staying positive while doing it.  Thanks for your advice and your time Diana.  I hope to talk to you again soon!  Kim Bomberlover84 Tue, 29 Apr 2008 00:00:00 GMT