Pancreatic Cancer Survivors

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  • MadelynJoe
    MadelynJoe Member Posts: 96

    thank you for your reply, and your mom had to be a real trooper. My wife's mother battled cancer for 2 and half years (lung) and I know my wife was in a lot of pain watching mom go through this. Condolences on your mom, and thank you for replying. god bless your future.

    Lung Cancer
    I saw your post regarding pancreatic cancer and the anguish your wife went through with her Mother. I want her to know that strides are being made in Lung Cancer research every day. I should know because I am almost a 5 year NSCLC survivor (May 2005 - May 2010) with no evidence of disease. My Mother also passed away 20 years ago from lung cancer.

    Have you seen any info anywhere regarding pancreatic cancer clinical trials? I have a friend that is inoperable and we will try almost anything at this point.

    God bless you both.

    Madelyn
  • MadelynJoe
    MadelynJoe Member Posts: 96

    Same situation
    Did you mom give up on life at all? My mother was diagnosed last Christmas and they cannot take it out. She was told that it would be "quality over quantity" and that she would be undergoing chemo the rest of her life. Recently though it feels as if she is just giving up on life. I don't know what to do - if anything. I know if she would try to enjoy what time she has left then she would last longer. But to get her in that mindset, I have no clue. What did you do with your mother in the days of illness? In the good days? I can't seem to get her to go outside at all, except to Dr. appts. I can't even seem to get her to shower anymore, or to put on makeup and to feel good about herself. I just want to help, but ultimately I don't know how. If you have any suggestions, it would be greatly appreciated.
    Tori

    Your Mother
    I had a friend that suffered with inoperable lung cancer that did the same thing your Mother is doing. He cried all day long and couldn't get it together sad to say. She lived a whole year past her diagnosis and I just wish she could have "made some happy memories" with her husband and kids instead of retreating into herself.

    I know how hard cancer can be because I am close to being a 5 year survivor of lung cancer and I have no evidence of disease in my body. New things are happening every day.

    Ask the social worker at your Mother's oncologist office about clinical trials, transportation to a major cancer research hospital (MD Anderson, Sloane-Kettering, etc.)

    God bless you and your family,

    Madelyn
  • MadelynJoe
    MadelynJoe Member Posts: 96
    Pluggan said:

    Whipple survivors
    I had a whipple done in 2000 after a diagnosis of PC.......I shall paste in a letter I wrote to Milo's corner (a page associated with pancreatica.org)......this page is specifically for follow up of Whipple survivors....Hello
    I thought I had seen and explored every pancreatic cancer site in the universe, but I had never seen one solely dedicated to Whipple veterans. I am both impressed and relieved!
    I am an eight year survivor, having had my procedure in April 2000. I had been diagnosed with PC only 4 weeks before surgery, and pre-op biopsy from brush cytology showed tumor to be non-malignant and confirmed with sample obtained during surgery. It became apparent that I did not have PC, classically at least, but what I call necrotizing pancreatitis ,in that due to a probable protein blockage, pancreatic enzymes became activated......I have been informed that 8-10% of tumors are found to be such.
    This essential difference makes quite a difference in presentation.......instead of hepatic infection and mild pain I had 4 or 5 massive attacks of abdominal pain, each of which I felt I'd never survive. I add this in order to ask of any commonality with other Whipple "veterans". I was and am alcoholic, though sober since Nov. of '99......the Whipple being one hell of way to modify one's behavior. (I had fought alcoholism, though, most of my adult life). I also had a GP who knew me well, and was ready to believe my descriptions of pain, since after the first hospital admittance nothing conclusive was found having ultrasound, MRI, and cat scan. The subsequent ERCP gave the PC diagnosis.
    My recovery, in retrospect, was without incident.......but only in retrospect, as I'm sure you understand! I returned to work about 2 months later and worked until my retirement in 2007. I stayed working 2 years after my earliest retirement date, but left then to enjoy a bit of life......a decision prompted by the Whipple experience, but also in course of my railroad work (exactly 1 year post-Whipple, April 2001) I was involved in a major train derailment where I was thrown through a wall of a passenger car that had become the point of impact with a concrete foundation during the derailment. I needed no further challenge to my mortality......and once again in retrospect .....I suppose that hastened my retirement decision!
    Now eight years later, as I'm sure you understand, it all seems to have happened to somebody else. There are uncanny similarities, however, to the described incidents.....the most prominent being survivor guilt. And, as you have indicated, there's not much of a community of numbers. Much like the rapid education just prior to the Whipple regarding one's own anatomy.....you quite accurately describe the subsequent on going education!
    I am involved, however in a local group "craigs cause" www.craigscause.ca , a site developed by the daughter of a PC patient, who died from complications shortly after his Whipple.
    I am a 58 year old male and have lots of questions and perhaps an odd answer or two, to life post whipple and consider myself fortunate to have stumbled across your site.
    Isn't it strange though when well meaning folks comment on how "lucky" you are.......I just nod, while I secretly believe that if I were that "lucky" I would never have needed a Whipple in the first place, and never took the train that day!!

    Fortunate yes........lucky no!!

    Inoperable Pancreatic Cancer
    My friend (a 51-year old single Mom with a 15 year old son) has inoperable Pancreatic Cancer and we are looking for clinical trials. Have you seen anything promising out there? She cannot have surgery because the tumor is on the duct going toward the kidneys and their is a pleural effusion on top of the tumor. She also does not have insurance because she could not afford COBRA when she lost her job. We're working on that with Medicaid.

    Any help would be apprciated.

    Madelyn (5 year lung cancer survivor)
    My husband Joe is a 7 year prostate cancer survivor!
  • a.sherman
    a.sherman Member Posts: 1

    Hello there, My mom was diganosed with pancreatic cancer on Sept 04, she went through radiation and chemo. Her cancer was in the duodem also! It was unoperable b/c of the attachment to the main artrey! Altough I do believe that her treatments prolonged her life. She battled cancer for 2 and half years! She just passed away in May 2006 and now I know that she is a true survivor!

    I know that really doesnt count for you trying to find the longest surviving pacreatic survivor.

    Jessica

    panceatic cancer
    hey,
    so im sorry your mom didnt make it, im gonig through my grandpa fighting pancreatic cancer. the doctors gave him weeks to live its now been over a year he was diagnosed christmas eve 2008, its really hard to see him go through it adn the doctors gave him no hope to live they said chemo would give him a couple weeks at the most but he would be sick the whole time. he is still always sick and tired and hurting.

    what i am wondering is how did you do it, i go to sleep each night wondering if my grandpa will make it through the night and wake up every morning praying he did adn will make it another day. its not easy and i know he isnt my father but he has acted like it adn has been there for me more then my dad or mom, i just dont know how to keep dealing with it and if there is anyway to help him????

    i know this doesnt help anyone wondering who the longest survivor is and i would like to know also but cant figure it out yet.

    -audrianna
  • glacierman
    glacierman Member Posts: 1
    long term pancreatic cancer survivor
    Hi, I stumbled on this while doing some research. My father was found to have advanced pancreatic cancer in 1995. He had half his pancreas, his gall bladder, most of his stomach, intestines and duodenum removed and it had spread to his lymph nodes. He was put on radiation and chemotherapy and told he had at the very most 2 years to live. As I said, that was in '95 and this year he went bow hunting for elk (at 80 years!) in the High Cascades of Oregon, as he has for the last 12 years. None of the doctors have a clue as to how he has survived with virtually no trace of the cancer remaining.
    It is extremely rare but dad is proof that one can, in his words, "Beat that d___n cancer!". Here is a link from a newspaper article about him from 7 or 8 years ago
    http://www.thefreelibrary.com/Man+carves+reputation+along+with+oars.(Business)(A+Creswell...-a0115779341
  • TheGator
    TheGator Member Posts: 2

    long term pancreatic cancer survivor
    Hi, I stumbled on this while doing some research. My father was found to have advanced pancreatic cancer in 1995. He had half his pancreas, his gall bladder, most of his stomach, intestines and duodenum removed and it had spread to his lymph nodes. He was put on radiation and chemotherapy and told he had at the very most 2 years to live. As I said, that was in '95 and this year he went bow hunting for elk (at 80 years!) in the High Cascades of Oregon, as he has for the last 12 years. None of the doctors have a clue as to how he has survived with virtually no trace of the cancer remaining.
    It is extremely rare but dad is proof that one can, in his words, "Beat that d___n cancer!". Here is a link from a newspaper article about him from 7 or 8 years ago
    http://www.thefreelibrary.com/Man+carves+reputation+along+with+oars.(Business)(A+Creswell...-a0115779341

    Concerned, Scared and ...Waiting
    Just diagnosed with pancreatic cancer. First appointment with oncologist verified the CT scans. Return on Tuesday for PET scan and then followup appointment on Friday. I have every hope of beating this thing, faith in God and just plain old gristle that I've been noted for. I'm determined that I'm not going to give up. At this point, just waiting to see how extensive this stuff is - oncologist said the only way to treat it is with Gemzar but research on the web indicates that many other approaches may be possible - if God's willing, I'm going to try them all until I find what works. I have the love of my wife and family and a few good friends to help me. I will not "go gently into the night."
  • Oneshot
    Oneshot Member Posts: 153 Member
    TheGator said:

    Concerned, Scared and ...Waiting
    Just diagnosed with pancreatic cancer. First appointment with oncologist verified the CT scans. Return on Tuesday for PET scan and then followup appointment on Friday. I have every hope of beating this thing, faith in God and just plain old gristle that I've been noted for. I'm determined that I'm not going to give up. At this point, just waiting to see how extensive this stuff is - oncologist said the only way to treat it is with Gemzar but research on the web indicates that many other approaches may be possible - if God's willing, I'm going to try them all until I find what works. I have the love of my wife and family and a few good friends to help me. I will not "go gently into the night."

    Right attitude Gator!
    Gator,
    Glad to see you got the right attitude! It's by no way a fair fight. Not to mention the fight against pancreatic cancer is different for each one of us. Sounds like you have done some research. As you may have seen. The odds on survival is not all that great according to the stats. Sounds like you will approach this the same way I did. STATS ARE MADE TO BE BROKEN! I, like you, had my faith,family, and a couple of close friends that helped me get through it all. I might add a good sense of humor helps out greatly! Even if it seems to be dark humor at times! I will keep you and your family in my prayers!

    I am a 26 month survivor of stage 3 pancreatic cancer myself. I had both rads and chemo (Gemzar) before my Whipple and chemo after the Whipple. I will say this.. It was one heck of a ride that I would not even wish upon my worst enemy! But the good news is, I got through it! If you would like. Feel free to contact me on the CSN e-mail.

    Take Care and GOD BLESS!
    Oneshot
  • muser22
    muser22 Member Posts: 4
    Oneshot said:

    Right attitude Gator!
    Gator,
    Glad to see you got the right attitude! It's by no way a fair fight. Not to mention the fight against pancreatic cancer is different for each one of us. Sounds like you have done some research. As you may have seen. The odds on survival is not all that great according to the stats. Sounds like you will approach this the same way I did. STATS ARE MADE TO BE BROKEN! I, like you, had my faith,family, and a couple of close friends that helped me get through it all. I might add a good sense of humor helps out greatly! Even if it seems to be dark humor at times! I will keep you and your family in my prayers!

    I am a 26 month survivor of stage 3 pancreatic cancer myself. I had both rads and chemo (Gemzar) before my Whipple and chemo after the Whipple. I will say this.. It was one heck of a ride that I would not even wish upon my worst enemy! But the good news is, I got through it! If you would like. Feel free to contact me on the CSN e-mail.

    Take Care and GOD BLESS!
    Oneshot

    So glad to find this site!
    Hello Oneshot and others! My husband, 53 yrs, was diagnosed with PC on August 20 of this year and underwent the Whipple on August 31 at UPMC. He is still recovering from surgery--infection set in to incision site and then gastrocutaneous fistula....also came down with CDiff from all the antibiotics! Aghhhh...We are waiting for all to heal to begin 6 months of Gemzar. He was diagnosed with adenocarcinoma. Surgery yielded clean margins, but 4 positive lymph nodes. Since spring he has lost 50 lbs...he is now eating much better, but still has his feeding tube in for supplemental feeding. It is very heartening to see so many that have gone beyond that depressing statistical horizon. We are so scared right now and glad to see that there is hope! God bless you all!

    muser22
  • hcuppett
    hcuppett Member Posts: 1

    Hello,
    Do you know of a resource for finding alternative oncologists in our area of Milwaukee, WI?

    thanks

    Finding Oncologist
    Any idea how to find highly recommended oncologists for treatment of PC? Looking for one in the DFW area!
  • Bro2
    Bro2 Member Posts: 3
    muser22 said:

    So glad to find this site!
    Hello Oneshot and others! My husband, 53 yrs, was diagnosed with PC on August 20 of this year and underwent the Whipple on August 31 at UPMC. He is still recovering from surgery--infection set in to incision site and then gastrocutaneous fistula....also came down with CDiff from all the antibiotics! Aghhhh...We are waiting for all to heal to begin 6 months of Gemzar. He was diagnosed with adenocarcinoma. Surgery yielded clean margins, but 4 positive lymph nodes. Since spring he has lost 50 lbs...he is now eating much better, but still has his feeding tube in for supplemental feeding. It is very heartening to see so many that have gone beyond that depressing statistical horizon. We are so scared right now and glad to see that there is hope! God bless you all!

    muser22

    UPMC Experience
    Hello muser22,

    God bless you, your husband, and your family.

    My brother was recently diagnosed with CUP, but best guess is bile duct. Our family is also going through the many emotions that, I am sure, everyone experiences. My brother was diagnosed on October 7, and has started his chemo treatment with cisplatin and gemcitibine (tradename Gemzar). He is being treated at UPMC - Hillman. I would be interested to know the name of your husband's oncologist, and your experience at UPMC. Perhaps we can provide each other with useful information and support.

    The following is a prayer that I have found to be comforting:

    Dear Lord, you bore our sufferings
    and carried our sorrows
    in order to show us clearly
    the value of human weakness and patience.
    I now turn to you to ask you to heal
    the soul and body of (____).
    I know, Lord, that sin tears away
    relationships between people and you.
    But there is no illness and no wound
    that you cannot heal.
    Come and touch (____)
    where he is most wounded and afflicted.

    I believe in your healing power and
    I trust and hope that you will hear my request
    for my sick brother/sister.

    If it is your will, however, that (____)
    should carry this cross of illness
    then I humbly pray that you give him/her
    the strength and perseverance
    to bear his/her cross with love.
    Grant that he/she and all those
    who are now weighed down
    with pain and other afflictions
    may realize that they are
    among the chosen ones
    whom you call blessed.
    Help them to understand
    that they are united with you
    in your sufferings
    for the salvation of the world.
    Amen.

    God bless,
    Bro2
  • muser22
    muser22 Member Posts: 4
    Bro2 said:

    UPMC Experience
    Hello muser22,

    God bless you, your husband, and your family.

    My brother was recently diagnosed with CUP, but best guess is bile duct. Our family is also going through the many emotions that, I am sure, everyone experiences. My brother was diagnosed on October 7, and has started his chemo treatment with cisplatin and gemcitibine (tradename Gemzar). He is being treated at UPMC - Hillman. I would be interested to know the name of your husband's oncologist, and your experience at UPMC. Perhaps we can provide each other with useful information and support.

    The following is a prayer that I have found to be comforting:

    Dear Lord, you bore our sufferings
    and carried our sorrows
    in order to show us clearly
    the value of human weakness and patience.
    I now turn to you to ask you to heal
    the soul and body of (____).
    I know, Lord, that sin tears away
    relationships between people and you.
    But there is no illness and no wound
    that you cannot heal.
    Come and touch (____)
    where he is most wounded and afflicted.

    I believe in your healing power and
    I trust and hope that you will hear my request
    for my sick brother/sister.

    If it is your will, however, that (____)
    should carry this cross of illness
    then I humbly pray that you give him/her
    the strength and perseverance
    to bear his/her cross with love.
    Grant that he/she and all those
    who are now weighed down
    with pain and other afflictions
    may realize that they are
    among the chosen ones
    whom you call blessed.
    Help them to understand
    that they are united with you
    in your sufferings
    for the salvation of the world.
    Amen.

    God bless,
    Bro2

    UPMC Experience
    Hello Bro2--

    Always sorry to hear about a new diagnosis! Our UPMC oncology surgeon was Dr. James Moser. He performed my husband's whipple on August 31. Up to this point we have not begun chemo. My husband developed an infection in his incision and then a gastrocutaneous fistula. FINALLY, he seems to be healing well. Chemo can not start until he is healed. OUr oncologist will be Dr. Awan in Johnstown,PA. close to home. He will be on Gemzar~~3wks on one wk off for 6 months. Right now he is feeling well, eating well, and getting some strength and stamina back. Recovering from this surgery has been brutal. The time between diagnosis and surgery was exactly 11 days, so we had very little time to adjust to the devastating news and prepare for this operation we had never heard of before. It has been one heck of a ride, but are hoping the worst is now over. Good luck to you on your journey. Keep the faith!
  • richardo
    richardo Member Posts: 4
    Bro2 said:

    UPMC Experience
    Hello muser22,

    God bless you, your husband, and your family.

    My brother was recently diagnosed with CUP, but best guess is bile duct. Our family is also going through the many emotions that, I am sure, everyone experiences. My brother was diagnosed on October 7, and has started his chemo treatment with cisplatin and gemcitibine (tradename Gemzar). He is being treated at UPMC - Hillman. I would be interested to know the name of your husband's oncologist, and your experience at UPMC. Perhaps we can provide each other with useful information and support.

    The following is a prayer that I have found to be comforting:

    Dear Lord, you bore our sufferings
    and carried our sorrows
    in order to show us clearly
    the value of human weakness and patience.
    I now turn to you to ask you to heal
    the soul and body of (____).
    I know, Lord, that sin tears away
    relationships between people and you.
    But there is no illness and no wound
    that you cannot heal.
    Come and touch (____)
    where he is most wounded and afflicted.

    I believe in your healing power and
    I trust and hope that you will hear my request
    for my sick brother/sister.

    If it is your will, however, that (____)
    should carry this cross of illness
    then I humbly pray that you give him/her
    the strength and perseverance
    to bear his/her cross with love.
    Grant that he/she and all those
    who are now weighed down
    with pain and other afflictions
    may realize that they are
    among the chosen ones
    whom you call blessed.
    Help them to understand
    that they are united with you
    in your sufferings
    for the salvation of the world.
    Amen.

    God bless,
    Bro2

    hey bro
    seen your story and just wanted to say god bless you. im from west virginia but had my whipple done in pittsburgh at UPMC. had my surgery done last year in dec. by dr. zey. to me he is really good. im still on chemo and radiation for another 2 weeks and im done with that. i had many other problems that came along with the cancer. seems one thing clears up and another starts. since the chemo ive had dizziness, low grade fever, blood clot, legs swelling, stomach drained of fluids, but last pet scan showed no signs of the cancer . another appointment at hillman in april. also that was a beautiful prayer. take care and god bless you all. Richard
  • muser22
    muser22 Member Posts: 4
    richardo said:

    hey bro
    seen your story and just wanted to say god bless you. im from west virginia but had my whipple done in pittsburgh at UPMC. had my surgery done last year in dec. by dr. zey. to me he is really good. im still on chemo and radiation for another 2 weeks and im done with that. i had many other problems that came along with the cancer. seems one thing clears up and another starts. since the chemo ive had dizziness, low grade fever, blood clot, legs swelling, stomach drained of fluids, but last pet scan showed no signs of the cancer . another appointment at hillman in april. also that was a beautiful prayer. take care and god bless you all. Richard

    Hi Richard
    So glad to read that you are almost done with your treatments and things are going well. My husband is waiting to start Gemzar. He has had a number of complications from his surgery; C-diff, infection, and gastrocutaneous fistula. None have become serious complications, but have resulted in an extended healing time and a delay in Chemo. He is feeling really well at this time. Eating good, getting his strength back---for a while there we were wondering if we had made the right decision going with the Whipple, but, really, what choice do you have? Dr. Zey and Dr. Moser are both wonderful. Thank God for them and their efforts. I hope your appointment in April continues to provide good news! Take care of yourself!
  • richardo
    richardo Member Posts: 4
    muser22 said:

    Hi Richard
    So glad to read that you are almost done with your treatments and things are going well. My husband is waiting to start Gemzar. He has had a number of complications from his surgery; C-diff, infection, and gastrocutaneous fistula. None have become serious complications, but have resulted in an extended healing time and a delay in Chemo. He is feeling really well at this time. Eating good, getting his strength back---for a while there we were wondering if we had made the right decision going with the Whipple, but, really, what choice do you have? Dr. Zey and Dr. Moser are both wonderful. Thank God for them and their efforts. I hope your appointment in April continues to provide good news! Take care of yourself!

    hi muser
    thanks for the reply, im glad hes doing ok. besides some side affects as i mentioned, the gemzar for me wasnt to bad. i started gemzar in feb. 2010 but they had to extend it because of either my white blood count was to low or my platelets to low. i also was wondering if i made the right decision. it took me 4 months to decide. they told me in july of 09 that i had cancer. i was really scared and didnt know what to do. i am glad i got ahold of dr. zeh in pittsburgh, oh ya, i spelled his name wrong last time. by that time my cancer was in stage 3 and i figured as you did, what choice do you have. also if they happen to mention cyber knife radiation, please make sure you get all the information you can on that. ive heard bad news on that but also heard others say its ok. me myself, im doing a 5 and a half week of regular radiation. well again im happy to hear that hes eating good and getting his strength back. take care and god bless
  • Bro2
    Bro2 Member Posts: 3
    richardo said:

    hi muser
    thanks for the reply, im glad hes doing ok. besides some side affects as i mentioned, the gemzar for me wasnt to bad. i started gemzar in feb. 2010 but they had to extend it because of either my white blood count was to low or my platelets to low. i also was wondering if i made the right decision. it took me 4 months to decide. they told me in july of 09 that i had cancer. i was really scared and didnt know what to do. i am glad i got ahold of dr. zeh in pittsburgh, oh ya, i spelled his name wrong last time. by that time my cancer was in stage 3 and i figured as you did, what choice do you have. also if they happen to mention cyber knife radiation, please make sure you get all the information you can on that. ive heard bad news on that but also heard others say its ok. me myself, im doing a 5 and a half week of regular radiation. well again im happy to hear that hes eating good and getting his strength back. take care and god bless

    Thanks Richard
    Hi Richard,

    I hope you are feeling well, and getting better each day. My brother started his 2nd cycle of chemo at Hillman yesterday. Each cycle is 3 weeks. After the 1st cycle, his pain has been reduced significantly, and he has gained 4 pounds. Hopefully, this is as sign that his tumor is shrinking. He will have a CATscan after this 2nd cycle to see if it is working. His attitude is amazing, and he has been doing all of the right things needed for recovery.

    I will pray for you, as I do all those that are going through the emotional and physical effects of cancer.

    Take care and God Bless,
    Bro2
  • destinie35
    destinie35 Member Posts: 1
    Bro2 said:

    Thanks Richard
    Hi Richard,

    I hope you are feeling well, and getting better each day. My brother started his 2nd cycle of chemo at Hillman yesterday. Each cycle is 3 weeks. After the 1st cycle, his pain has been reduced significantly, and he has gained 4 pounds. Hopefully, this is as sign that his tumor is shrinking. He will have a CATscan after this 2nd cycle to see if it is working. His attitude is amazing, and he has been doing all of the right things needed for recovery.

    I will pray for you, as I do all those that are going through the emotional and physical effects of cancer.

    Take care and God Bless,
    Bro2

    whipple survivor
    Hi everyone. I am replying to this post since it was relatively recent. I am trying to find out about long term complications of the whipple. My mom had hers in 2000 and is doing good, considering. She became diabetic but manages to control that. In the last year she has been having problems with her stomach emptying the food out. She has gastroparesis and was on Reglin for a while, but it caused her to have severe tremors, so they stopped that. She is now on Domperidone which is a non-FDA approved drug from Canada. The anastomotic site where they reconnected her jejunum to her stomach was narrowing and she has had 3 procedures to stretch it. She now has edema around the area and so the food still isn't moving like it should and the doctors are scratching their heads. Shwe has a lot of pain and what she describes as "twisting" in the top of her stomach that the doctors have said is a combination of her stomach not pushing the food out like it should and the narrowing not allowing the food to pass like it shouold. I am trying to figure out if there are any 10 year plus survivors out there and if they have any of these or similar complications. I just don't know where else to turn bc this cancer is so bad that there aren't alot of blessed and fortunate survivors like my mom and you all. Any advice, help, words of wisdom would be much appreciated. thanks, Julie
  • saskgirl2
    saskgirl2 Member Posts: 6

    whipple survivor
    Hi everyone. I am replying to this post since it was relatively recent. I am trying to find out about long term complications of the whipple. My mom had hers in 2000 and is doing good, considering. She became diabetic but manages to control that. In the last year she has been having problems with her stomach emptying the food out. She has gastroparesis and was on Reglin for a while, but it caused her to have severe tremors, so they stopped that. She is now on Domperidone which is a non-FDA approved drug from Canada. The anastomotic site where they reconnected her jejunum to her stomach was narrowing and she has had 3 procedures to stretch it. She now has edema around the area and so the food still isn't moving like it should and the doctors are scratching their heads. Shwe has a lot of pain and what she describes as "twisting" in the top of her stomach that the doctors have said is a combination of her stomach not pushing the food out like it should and the narrowing not allowing the food to pass like it shouold. I am trying to figure out if there are any 10 year plus survivors out there and if they have any of these or similar complications. I just don't know where else to turn bc this cancer is so bad that there aren't alot of blessed and fortunate survivors like my mom and you all. Any advice, help, words of wisdom would be much appreciated. thanks, Julie

    Just diagnoised
    Thank goodness I found this site. I needed hope that all is not lost. I just underwent the whipple on Nov 29. Survived a12 hour surgery and managed to be in the hospital for only 9 days. The pathlogy report came back indicating stage 2 with a tumor greater the 2cm in distance in the head with it invading the ampullar of vadar and the duodenum. 11 lymph nodes were taken out with 7 showing andenocarcinoma in them. They are now planning on chemo and radiation in the new year. They gave me a prognosis of 1 to 2 years, but i will show them all. I am stubborn and wont take this laying down. I have a 3 1/2 year old daughter that needs me. The only thing that is bothering me 4 weeks post surgery is the lack of energy i have.Will it ever get better? The doc said the surgery went beautifully. Still i am scared of whats to come but you all give me hope. If anyone can provide me with encouragment please email me at : leskosky@sasktel.net
  • kachako
    kachako Member Posts: 1
    Pancreatic Cancer Survivor
    Hello.
    First, let me tell you, this is the very first time I write about my case ever.I'm a pancreatic cancer survivor since April 2002 when they performed the Whiple and subsecuently, went for quimo and radiation treatment. I'm 48 years old and obviously a very lucky guy. The reason I never share my ordeal with most people, is that I am not and never been a religious person, and in this difficult situations, people may feel ofended when I leave god out of the ecuation. I believe that I'm survived cancer so far, thanks to several facts like timing after the first symtoms appear, great effort of by a medical team, age, protocols of quimo and radiation after the Whiple, etc.
    Good luck to you and if you have any questions or more details about my experience, I will be happy to share them with you.
  • bcs1952
    bcs1952 Member Posts: 5

    whipple survivor
    Hi everyone. I am replying to this post since it was relatively recent. I am trying to find out about long term complications of the whipple. My mom had hers in 2000 and is doing good, considering. She became diabetic but manages to control that. In the last year she has been having problems with her stomach emptying the food out. She has gastroparesis and was on Reglin for a while, but it caused her to have severe tremors, so they stopped that. She is now on Domperidone which is a non-FDA approved drug from Canada. The anastomotic site where they reconnected her jejunum to her stomach was narrowing and she has had 3 procedures to stretch it. She now has edema around the area and so the food still isn't moving like it should and the doctors are scratching their heads. Shwe has a lot of pain and what she describes as "twisting" in the top of her stomach that the doctors have said is a combination of her stomach not pushing the food out like it should and the narrowing not allowing the food to pass like it shouold. I am trying to figure out if there are any 10 year plus survivors out there and if they have any of these or similar complications. I just don't know where else to turn bc this cancer is so bad that there aren't alot of blessed and fortunate survivors like my mom and you all. Any advice, help, words of wisdom would be much appreciated. thanks, Julie

    To destinie35
    Hi. I had Whipple surgery a little over eight years ago. Life now is mostly good, and as close to normal as it can be after this diagnosis and surgery. Although I am not having the problem your Mom is having, I wanted to post to let you know there are a few of us out here. I became diabetic after surgery also, and have been able to handle it with diet and exercise. I take pancreatic enzymes (Creon) with meals and snacks.

    About three years after surgery, I noticed I often would feel uncomfortably full after eating dinner, and that it seemed the food "stuck around" much longer than it should. Dinner is our largest meal of the day, although I eat what is considered a normal, healthy low fat meal. For example, I stick with meat/fish portions for 3-4 oz. max. I found that having a small glass of wine with dinner helped. Somewhere there is an explanation for this, it relaxes something in your stomach and allows food to pass through more easily. Sometimes this is not a good thing especially if a person has trouble with dumping syndrome. I don't, so it actually helps me. I don't have wine every day. I notice the difference in my stomach emptying when I don't. I know some people have other problems with alcohol or avoid it for reasons of faith. I also don't know that it would be helpful for your mom if her problem is related to scar tissue. I am very hesitant to offer anything close to advice because we are all so different. Thought I would share my experience and I hope it is not offensive to you. (I got my doctor's approval before adding wine to my diet.)

    I hope your Mom can find something to help.
  • muser22
    muser22 Member Posts: 4
    saskgirl2 said:

    Just diagnoised
    Thank goodness I found this site. I needed hope that all is not lost. I just underwent the whipple on Nov 29. Survived a12 hour surgery and managed to be in the hospital for only 9 days. The pathlogy report came back indicating stage 2 with a tumor greater the 2cm in distance in the head with it invading the ampullar of vadar and the duodenum. 11 lymph nodes were taken out with 7 showing andenocarcinoma in them. They are now planning on chemo and radiation in the new year. They gave me a prognosis of 1 to 2 years, but i will show them all. I am stubborn and wont take this laying down. I have a 3 1/2 year old daughter that needs me. The only thing that is bothering me 4 weeks post surgery is the lack of energy i have.Will it ever get better? The doc said the surgery went beautifully. Still i am scared of whats to come but you all give me hope. If anyone can provide me with encouragment please email me at : leskosky@sasktel.net

    Welcome!
    My husband had his whipple surgery in August and still does not have the energy he had before. I have read it may take a year or more to return...for some it just never does. He was VERY weak after surgery and had some complications~~infection, c-diff, fistula~~ but is now eating well and feels much better than he did. Take it slow..it all takes time. There is another site you may want to check out..It is the John Hopkins site. There are wonderful people there also who are willing to share their experiences and answer questions. The link is: http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT

    Good luck to you!