CancerCompass message board discussion started by eggbert on 2/19/2008 http://www.cancercompass.com/message-board/message/all,21126,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with Ampullary Cancer on 1-4-08 and had the whipple procedure done at IU Medical Center by Dr. Thomas Howard.  The surgery was a success but the three lymph nodes they pulled returned positive for cancer and John is in Stage 4, he has an open wound do to infection and so chemo/radiation is on hold until the wound heals.  It would be great to hear from others on what they are doing for therapy.  As I am sure most of you hear with this prognosis is a 40% chance of a 5 year life span.  We have an 8 year old and John has three boys from a previous marriage 17, 19 and 25,  This has hit us like a ton of bricks and any information would be great on what others have experienced in chemo/radiation that has some encouraging outcome.Thanks, Kristi   eggbert Tue, 19 Feb 2008 00:00:00 GMT We can undersatnd how you must be feeling.  My wife also underwent whipple in Pakistan and are always thankful to God for giving her health.Please do consider alternate therapies also.  It is believed that body should be more alkaline than acidic and a simple urine test will tell you. All the best. Never give-up.Regards,Fiaz Agha Khan Thu, 21 Feb 2008 00:00:00 GMT  On 2/19/2008 eggbert wrote:My husband was diagnosed with Ampullary Cancer on 1-4-08 and had the whipple procedure done at IU Medical Center by Dr. Thomas Howard.  The surgery was a success but the three lymph nodes they pulled returned positive for cancer and John is in Stage 4, he has an open wound do to infection and so chemo/radiation is on hold until the wound heals.  It would be great to hear from others on what they are doing for therapy.  As I am sure most of you hear with this prognosis is a 40% chance of a 5 year life span.  We have an 8 year old and John has three boys from a previous marriage 17, 19 and 25,  This has hit us like a ton of bricks and any information would be great on what others have experienced in chemo/radiation that has some encouraging outcome.Thanks, Kristi   Kristi; I think Fiaz is giving you great advice about alternative or complementary therapies.  My husband had a partial whipple and 2 nodes were cancerous--however he has undergone 5 months of chemo here in New York and his tumor markers have fallen nicely.  I believe in the power of love and in taking control of the disease.  We are currently researching other forms of wellness to keep him healthy when chemotherapy is finished.  There is a classic book that I am currently reading called "Love, Medicine and Miracles" by Bernie Siegel, M.D..  Please read it.  You will be encouraged.  Your husband has many things to live for. Best to you,Lisa arlo2 Thu, 21 Feb 2008 00:00:00 GMT  On 2/19/2008 eggbert wrote:My husband was diagnosed with Ampullary Cancer on 1-4-08 and had the whipple procedure done at IU Medical Center by Dr. Thomas Howard.  The surgery was a success but the three lymph nodes they pulled returned positive for cancer and John is in Stage 4, he has an open wound do to infection and so chemo/radiation is on hold until the wound heals.  It would be great to hear from others on what they are doing for therapy.  As I am sure most of you hear with this prognosis is a 40% chance of a 5 year life span.  We have an 8 year old and John has three boys from a previous marriage 17, 19 and 25,  This has hit us like a ton of bricks and any information would be great on what others have experienced in chemo/radiation that has some encouraging outcome.Thanks, Kristi   Kristi,I am by no means an expert on Pancreatic cancer, but I wanted to give you a hopeful message.  An elder at our church had a whipple at just a community hospital, and he has been cancer free for a number of years now.  He looked very bad after the surgery, but now, probably at least 5 years or so beyond the surgery, he looks very healthy.Ginger gingery56 Thu, 21 Feb 2008 00:00:00 GMT   Fiaz,Thank you for responding and I plan on checking it all out to make sure what is best for John and his health.  I plan to research the alternative therapies while John is recovering from surgery.  Thanks again!!Kristi eggbert Thu, 21 Feb 2008 00:00:00 GMT Ginger,Thank you for the hopeful message...I so needed this.  We are looking to God for comfort, but when I get to read about others going through this and how they are doing.  Thanks, Kristi   eggbert Thu, 21 Feb 2008 00:00:00 GMT Lisa,I have written down the book and I plan on buying it, thanks so much for caring and sharing this information with me! Kristi eggbert Thu, 21 Feb 2008 00:00:00 GMT Kristi, I would love to keep in touch if you want to keep me posted on your husband's progress.  I will put him on my prayer list.  I do believe that is why our church elder was healed.  He believes in the Power of prayer. My email address is --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--if you want to "talk" more.          Ginger gingery56 Thu, 21 Feb 2008 00:00:00 GMT Ginger,I didn't get your email address as this sight is protected and will not allow me to see the address.  I would love to talk more and to keep you posted about John's progress.  I am not sure how to do this unless we did private message.  Do you know?  Yes, there is nothing like the power of prayer and I totally believe John can be healed of his Stage 4 cancer and I am looking to God each day for strength as I know He is in control.Kristi    eggbert Fri, 22 Feb 2008 00:00:00 GMT Kristi, My husband is 53 and had his Whipple at the University of Kansas Med Center on January 15. He was diagnosed in December and is stage 3. We, too, are dealing with wound issues, some nectroic tissue had to be removed last week so he has two open areas that have to be tended (one about three to four inches long and the other is about two inches long) but he's doing OK with that. When you mentioned that chemo would have to be delayed due to your husband's wound, it reminded me of what our oncologist said when we met him for the first time last Friday. I was very concerned that chemoradiation would be delayed due to the open wounds (one of them is quite deep) and he said it was not necessary to wait, that yes, a lot of people do receommend delaying chemo if there are wounds but he does not believe that the patient who is otherwise healthy will be damaged by starting therapy with these kinds of wounds. He actually said he thought that philosophy was crap--and at that moment I knew I was going to like this guy. We just have to follow the same precautions we are now--avoid large crowds (as if he'll want to go hang at the mall anyway!) and use lots of hand sanitizer. You may wat to press your oncologist a little bit to see if he might relent and allow your husband to go ahead and start treatment sooner rather than later. TessG Mon, 25 Feb 2008 00:00:00 GMT  On 2/25/2008 TessG wrote:Kristi, My husband is 53 and had his Whipple at the University of Kansas Med Center on January 15. He was diagnosed in December and is stage 3. We, too, are dealing with wound issues, some nectroic tissue had to be removed last week so he has two open areas that have to be tended (one about three to four inches long and the other is about two inches long) but he's doing OK with that. When you mentioned that chemo would have to be delayed due to your husband's wound, it reminded me of what our oncologist said when we met him for the first time last Friday. I was very concerned that chemoradiation would be delayed due to the open wounds (one of them is quite deep) and he said it was not necessary to wait, that yes, a lot of people do receommend delaying chemo if there are wounds but he does not believe that the patient who is otherwise healthy will be damaged by starting therapy with these kinds of wounds. He actually said he thought that philosophy was crap--and at that moment I knew I was going to like this guy. We just have to follow the same precautions we are now--avoid large crowds (as if he'll want to go hang at the mall anyway!) and use lots of hand sanitizer. You may wat to press your oncologist a little bit to see if he might relent and allow your husband to go ahead and start treatment sooner rather than later. TessG,Thanks for the info.  I will definitely try to push the issue of chemo/radiation.  My husband is just too weak right now and has lost so much weight, he cannot eat well either, even the supplemental drinks he is struggling with.  He doesn't seem to be mentally ready, and he had said at one time he wasn't going to do treatment, then another day he says he will.  The diagnosis is new and it is hard to take it in on some days as I am sure you know.Thanks again for your information, this is great advice.Kristi eggbert Mon, 25 Feb 2008 00:00:00 GMT I am praying for you. We are so lucky that my husband is recovering well from the surgery. He eats everything (but in smaller amounts) He does have the bloating, gas and stomach discomfort but these things seem to be manageable for him. Of course, your hubby just had his on the 29th so he probably just needs a little more time to get better.  It is so hard to take this one day at a time but I am starting to learn how to do that. Please make sure to take care of yourself so that you can continue to advocate for your husband. Some days are better than others. Feel free to send me a private reply if you want to "talk." I could use a "Whipple" friend myself! TessG Wed, 27 Feb 2008 00:00:00 GMT I forgot to mention--I understand about the mood changes too. I have them and so does my husband (Robert, by the way) Mine is in an extreme state of denial at the moment. He actaully told me the other day that he doesn't have cancer. So I asked him why is he going to have chemoradiation and he said it was just a precaution. The two of us can be sitting in the same room with a doctor and he hears something completely different from what I hear. I was actually very angry with him because of his denial and I felt like I am the only person in this relationship who understands the seriousness of this. But then I finally realized that if he is happy in his "I don't have cancer" state, who am I to deny him that? (This of course happened after I asked him point blank if he intends to fight this or not because I feel like I have a right to know) After our conversation, I feel much more at peace. I was able to tell him how worried I am and now I feel less worried. I've decided I am not going to protect him from my feelings (but I am not going to smack him in the face with them either!). I am rambling--sorry! TessG Wed, 27 Feb 2008 00:00:00 GMT Hi I was diagnosed with Ampullary cancer in 2005 and had a whipple in Nov 2005 in Calgary Canada. I was told that they had taken everything with a wide margin.12 months later I had digective issues and after testing I was told it had returned and they must have left some cancerous cells in me. The onclologists in Calgary told me there was nothing they could do for me and I should accept the fatal consequences. I then flew to M D Anderson in Houston for a second opinion. they offered me a double chemo treatment that they have had a 50% succes rate with in re-occurring ampullary cancer. I am on the fourth treatment of chemo and the tumor marker has dropped from a high of 158 to 48. The specialist in Houston advises me that this is a positive sign that the double chemo is working and I am confident I WILL beat this. My message to everyone facing this is to NEVER accept a first opinion or one they dont accept and seek a second one.Thank you for letting me share this with everyone John Hutchie Fri, 29 Feb 2008 00:00:00 GMT My mom had small cell ampullary cancer, which is a little more agressive than regular ampullary cancer.  Ampullary cancer is not pancreatic cancer, but is so close to the pancreas, it usually invades that as well. When small cell cancer is involved, the type of chemo given is for small cell, not chemo for regular ampullary cancer. My mom had the whipple, was clear, the cancer came back in the liver. She had irinotecan chemo, which got rid of the cancer for 7 to 8 months, she was actually feeling great, but then the cancer came back.  It came back on the liver, and above the liver. She tried other chemo's but they did not work.  She passed away 2 1/2 years after the surgery.  However, I do think she would be alive today if her cancer had not been the type of 'small cell' cancer. You see, there is no cure for small cell cancer, so hang in there and don't give up.  BY the way, for all of you that do have loved one's with ampullary or pancreatic cancer, there is a group called Pancan that is pushing for more money to fight this type of cancer. Look it up on the internet, and support this group for research!  We need to find a way to test for this type of cancer for early detection.  This cancer is overlooked, we need to find ways to dectect and treat this cancer that silently kills. The group doesn't need money, it needs you to write to your representatives that go to Washington. It is really easy, they have form letters, you just sign your name. Do it for your loved ones!! Denise3278 Sun, 02 Mar 2008 00:00:00 GMT Hi,This is probably a dumb questions but I would like to know the name of the test that measures the alkaline level. I had read a lot about this and would like to find out about my dad's ph level but this is not measured during regular lab tests.Thanks! GeorgesGirl Sun, 02 Mar 2008 00:00:00 GMT Normally it is called  Urinalysis or " UA".  You can ask any lab to check urine for PH.  Another urine test called BladderCheck helps also. All the bestFiaz Agha Khan Tue, 04 Mar 2008 00:00:00 GMT I am curious, what type of ampullary cancer do you have - adenocarcinoma or small cell?  What stage were you told you were at after your first surgery?  Did you do any chemo or radiation at that time?   What kind of medicines with double chemo are you getting now? brotzdesart Mon, 10 Mar 2008 00:00:00 GMT brotzdesart,John has adenocarcinoma, Stage 4, no chemo or radiation prior to surgery and now we are getting ready to start chemo and radiation for the first time here in about 3 weeks or so.  John's tumor was located in the bile duct which blocked the liver functions causing him to itch and be jaundice.  He currently has a wound healing from the inside out, due to infection and 103 fevers for 6 days post surgery.  Kristi   eggbert Mon, 10 Mar 2008 00:00:00 GMT John, If you check this site again, I would like to know what stage cancer you had in 2005 and what kind -adeno or small cell etc.  I would also like to know what type of drugs you are taking in the double chemotherapy you are receiving now.On 2/29/2008 Hutchie wrote:Hi I was diagnosed with Ampullary cancer in 2005 and had a whipple in Nov 2005 in Calgary Canada. I was told that they had taken everything with a wide margin.12 months later I had digective issues and after testing I was told it had returned and they must have left some cancerous cells in me. The onclologists in Calgary told me there was nothing they could do for me and I should accept the fatal consequences. I then flew to M D Anderson in Houston for a second opinion. they offered me a double chemo treatment that they have had a 50% succes rate with in re-occurring ampullary cancer. I am on the fourth treatment of chemo and the tumor marker has dropped from a high of 158 to 48. The specialist in Houston advises me that this is a positive sign that the double chemo is working and I am confident I WILL beat this. My message to everyone facing this is to NEVER accept a first opinion or one they dont accept and seek a second one.Thank you for letting me share this with everyone John  brotzdesart Wed, 12 Mar 2008 00:00:00 GMT Kristi, I see my confusion - I am hoping to get the other John to respond to my questions - the one from Calgary who replied to your post.I had an open wound like your husband, John.  I had three surgeries - the initial one and then I bled out twice which required two more surgeries within 10 days of the original one.  The first time I had stitches, the second time I had staples and the third time they did a wound vac.  That took four months to heal.  I also did chemo and radiation and unlike the surgery, I sailed through that.  It was all really hard on my husband (I was hospitalized out of state for six weeks and at home another 3 weeks).  He lost a lot of weight skipping meals at the hospital and from muscle mass reduction from sitting around in the hospital with me.  Remember to take care of yourself also.  I am not the first member of my family to have cancer so I know how hard it is.  Ellen  brotzdesart Wed, 12 Mar 2008 00:00:00 GMT  On 2/29/2008 Hutchie wrote:Hi I was diagnosed with Ampullary cancer in 2005 and had a whipple in Nov 2005 in Calgary Canada. I was told that they had taken everything with a wide margin.12 months later I had digective issues and after testing I was told it had returned and they must have left some cancerous cells in me. The onclologists in Calgary told me there was nothing they could do for me and I should accept the fatal consequences. I then flew to M D Anderson in Houston for a second opinion. they offered me a double chemo treatment that they have had a 50% succes rate with in re-occurring ampullary cancer. I am on the fourth treatment of chemo and the tumor marker has dropped from a high of 158 to 48. The specialist in Houston advises me that this is a positive sign that the double chemo is working and I am confident I WILL beat this. My message to everyone facing this is to NEVER accept a first opinion or one they dont accept and seek a second one.Thank you for letting me share this with everyone JohnDear John,I also had or have Ampullary cancer and had a Whipple in January 2007. I would be most interested to know what treatment you were given by      M.D. Anderson in Houston with such success.Wishing you a continued progress,Zupka   Zupka Fri, 04 Apr 2008 00:00:00 GMT i live in karachi and my mom is also diagonsed with klatskin's tumour can u tell me the name of the doctor that did yr sugery in aga khan hos.thanks salahuddin Thu, 10 Apr 2008 00:00:00 GMT Hi Kristi.  I'm a 42 year old wife and mother who was diagnosed with ampullary cancer on March 5th and had the Whipple performed on March 25th at University Hospital in Cleveland Ohio.  My surgeon was one of the best in the city and I seem to be recovering well.  I am considered stage 2 as it was found in a few of my lymph nodes.  I am actually meeting my oncologist tomorrow to find out what course of treatment we will puruse.  I know how scared my husband and children are, so I can sympathize with what you must be going through.  Be strong and stay positive----have faith and let your husband know how much he is loved and cherished.  I don't know where I would be without my family and friends.  They are my backbone and encouragement and inspiration while trying to deal with this scary monster.  I wish you and your husband nothing but the best; I'll be praying for us all!  Take Care!  Kim Bomberlover84 Tue, 29 Apr 2008 00:00:00 GMT  On 4/29/2008 Bomberlover84 wrote:Hi Kristi.  I'm a 42 year old wife and mother who was diagnosed with ampullary cancer on March 5th and had the Whipple performed on March 25th at University Hospital in Cleveland Ohio.  My surgeon was one of the best in the city and I seem to be recovering well.  I am considered stage 2 as it was found in a few of my lymph nodes.  I am actually meeting my oncologist tomorrow to find out what course of treatment we will puruse.  I know how scared my husband and children are, so I can sympathize with what you must be going through.  Be strong and stay positive----have faith and let your husband know how much he is loved and cherished.  I don't know where I would be without my family and friends.  They are my backbone and encouragement and inspiration while trying to deal with this scary monster.  I wish you and your husband nothing but the best; I'll be praying for us all!  Take Care!  KimKim, I just read your message for the first time.  Would you kindly share what your oncologist told you.  My husband just had the whipple and two of his lymph nodes had been invaded.  We are going to the oncologist today.  Overwhelmed by all of this.Thanks,  Rose anchorcros Mon, 19 May 2008 00:00:00 GMT Sorry it took me so long to respond but I have beentravelling back and forth to M D Anderson for treatment and didnt check the board.I was given a combo of daily xeloda and infusion of Oxaliplatin every 3rd week. After 5 months of this I had a scan and the re-occuring tumor had reduced in size by 60%. & weeks ago we moved on to the same double chemo and daily radiation in 4 places for a 6 1/2 week duration.I have come through the this 6 1/2 weeks with very little side effects and feel good. They will wait 6 weeks now until they scan me again.Hope this helps John (Hutchie) Hutchie Thu, 12 Jun 2008 00:00:00 GMT