Duodenal cancer: recovery from whipples

simkor
simkor Member Posts: 17
edited March 2014 in Rare and Other Cancers #1
Hi, My husband was diagnosed 10 wks ago with duodenal cancer which had spread to panceas. He had a whipples. He came out of the op ok but in recovery started to bleed they took him into surgery again. They couldnt stop the bleed & cam every close to lossing him. He had a third surgery the next day they stopped the bleed. three days later took him back to surgery to fix a bile leak. He was in hospital for 2 months. He was discharged last week we have a nurse who comes to our house. Im interest in other peoples storys bout the whipple surgery & the recovery. any info would be great.

Thanx Korina
«13

Comments

  • joekolb24
    joekolb24 Member Posts: 1
    #2
    Duodenal cancer: recovery from whipple
    Korina, I was saddened to hear o all the complications regarding your husband's Whipple surgery.
    My wife is facing the same procedure next week. Now that another month has passed by I was hoping you might have an update, and more encouraging news.
    Also, do you know what your surgeon's track record is and also how many of these procedures he has performed?
    Joe
  • Oneshot
    Oneshot Member Posts: 153 Member
    #3
    Korina and Joe
    I'm a 14 month survivor of stage 3 pancreatic cancer. I had a whipple done in sept. 2008. I found that PANCAN.ORG was an other good source of info. about the whipple procedure. It had stories of people who have had PC and a support group also if I remember correctly.

    I will keep both you and your spouses in my prayers
  • CaryRenault
    CaryRenault Member Posts: 11
    #4
    Whipple story
    Hi Korina -

    I was due to have a Whipple. I have Pancreatic Adenocarcinoma. I am NOT sure what
    other questions I should be asking my Doctors. Tghe surgeon did NOT want to do a Whipple because the PET scan showed 2 very small nodules. 1 was removed with a VATS operation.
    That confirmed to the surgeon that it metasized to my lung. So, I am know trying to getinto a clinical trial. View; http://clinicaltrials.dfhcc.harvard.edu/trials/1397
    which I hope will solve a lot of problems. I am ONLY 51. Have a wonderful caregiver wife and
    my 85 year old mother lives with us with my service/site dog.

    Later,
    Cary
  • gracie3459
    gracie3459 Member Posts: 1
    #5
    Surviving a whipple
    I had my Whipple in Grand Rapids MI in May of 2006. I had a misdiagnosed Duodenal tumor that had spread to my Pancreas by the time it was accurately diagnosed. It was a Stage 3 Cancer at that point.

    I was in the hospital for 2 weeks. The staff labeled me the "poster child of the Whipple Procedure" and I told them that I would hate to have had a "normal" recovery. I had a drainage tube for about 2 months but that was manageable at home without outside care. That tube was to drain off leakage of pancreatic fluids into the abdominal cavity.

    I resumed regular diet after about 4 days in the hospital. Obviously, going from soft to regular as tolerated.

    I took advantage of having Acupuncture treatments which really helped relieve the pain. I had gotten into a pain deficit due to my epidural coming out on its own before I was sequenced onto IV meds.

    I was up and walking the halls (with much pain) but up and walking after the 4th or 5th day. This activity was what they said made my recovery as quick as it was. The pain was excruciating but just remember to get a new pain dosage on board your body and then take the walk.

    For the person that is looking to have this done. I can only say that it won't be any fun but if it keeps you alive it is worth it. I spent the past week end down hill skiing with my 3 grand daughters and will be traveling to Cheyenne WY to spend a week with my Grand sons on Tuesday.

    A short synopsis. I have had cancer 4 times plus one exploratory surgery to rule out diffinitively a Pancreas cancer back in the 80s. I had endometrial (uterine), colon rt sided, the duodenal and then another colon lt side 18 months after the duodenal. None of these were true metastases but due to what clinically presents as a genetic condition. This does not, at present, genetically blood test as genetic but we treat my body as if it was positive. I was 34 years old with an 11 year old and a 13 year old when I had my first surgery. I have been able to watch not only their lives but the arrival and growth of 6 grand children. So, get the best surgeon you can find and have it done. I don't know how much info is allowed on this site as to facilities and surgeons so I won't add anything else.
  • raidersfan29
    raidersfan29 Member Posts: 2
    #6
    gracie3459 said:

    Surviving a whipple
    I had my Whipple in Grand Rapids MI in May of 2006. I had a misdiagnosed Duodenal tumor that had spread to my Pancreas by the time it was accurately diagnosed. It was a Stage 3 Cancer at that point.

    I was in the hospital for 2 weeks. The staff labeled me the "poster child of the Whipple Procedure" and I told them that I would hate to have had a "normal" recovery. I had a drainage tube for about 2 months but that was manageable at home without outside care. That tube was to drain off leakage of pancreatic fluids into the abdominal cavity.

    I resumed regular diet after about 4 days in the hospital. Obviously, going from soft to regular as tolerated.

    I took advantage of having Acupuncture treatments which really helped relieve the pain. I had gotten into a pain deficit due to my epidural coming out on its own before I was sequenced onto IV meds.

    I was up and walking the halls (with much pain) but up and walking after the 4th or 5th day. This activity was what they said made my recovery as quick as it was. The pain was excruciating but just remember to get a new pain dosage on board your body and then take the walk.

    For the person that is looking to have this done. I can only say that it won't be any fun but if it keeps you alive it is worth it. I spent the past week end down hill skiing with my 3 grand daughters and will be traveling to Cheyenne WY to spend a week with my Grand sons on Tuesday.

    A short synopsis. I have had cancer 4 times plus one exploratory surgery to rule out diffinitively a Pancreas cancer back in the 80s. I had endometrial (uterine), colon rt sided, the duodenal and then another colon lt side 18 months after the duodenal. None of these were true metastases but due to what clinically presents as a genetic condition. This does not, at present, genetically blood test as genetic but we treat my body as if it was positive. I was 34 years old with an 11 year old and a 13 year old when I had my first surgery. I have been able to watch not only their lives but the arrival and growth of 6 grand children. So, get the best surgeon you can find and have it done. I don't know how much info is allowed on this site as to facilities and surgeons so I won't add anything else.

    duodenal cancer.
    my whipple is set for march 9th and im getting worried the rareity of the cancer and the severity of the surgery scares me can anyone give me words of incourgement to help me through this
  • bosco134
    bosco134 Member Posts: 4
    #7
    raidersfan29 said:

    duodenal cancer.
    my whipple is set for march 9th and im getting worried the rareity of the cancer and the severity of the surgery scares me can anyone give me words of incourgement to help me through this

    duodenal cancer
    my husband just came home from a whipple/nueroendrocine tumor the size of an eggplant and 6 nodes taken out he was in surgery for 7 hours we were also quite nervous but have faith in your Dr. and prayer it does work. Good Luck hope you are ok. Where is hospital?
  • Haylez
    Haylez Member Posts: 6
    #8
    Hi everyone.
    My Mum, age 52,
    Hi everyone.

    My Mum, age 52, was diagnosed with Duodenal cancer, which had spread to the liver, thankfully very early, about 5 weeks ago.

    She had a whipples last Tuesday and is doing really well. Obviously the recovery for such an operation is huge, but she is now just on Panadol for the pain, and was allowed to eat ice cream today!

    She tries to get up and do a lap of the ward as often as she can, it makes her feel a lot better. She gets tired easily, but doesnt complain, as it will hopefully save her life.

    She is one of the lucky ones that has had no complications so far. Although she is still in hospital, and expected to be for at least another week.

    I think it's so important to have a good attitude with it. Her attitude right from the start has been "I don't care what it takes, make me better". She was prepared for what a huge recovery it would be, and is taking it day by day.

    Please keep me updated as to how you are all going. And those of you who are going to have the procedure, I wish you luck! Remember the link between mind and body, be positive about your experience and your body will follow.

    I will keep you all in my prayers.

    Haylez
    Sydney, Australia
  • Mrandl
    Mrandl Member Posts: 3
    #9
    Whipple recovery
    I'm 9 and a half weeks out following my whipple. I'm about 90% of my old self. I was in hospital 15 days due to a c-dif infection after 7 days. I lost about 40 lbs. but at 244 I needed to take some off. I still have a drain and occasional bad pain just below my breast bone. I think it's gas. My first round of chemo wasn't too bad, just tired and very sensative to cold. I'm determined to beat it. Best to all of you with it or supporting loved ones.
  • MichelleB83845
    MichelleB83845 Member Posts: 13
    #10
    Mrandl said:

    Whipple recovery
    I'm 9 and a half weeks out following my whipple. I'm about 90% of my old self. I was in hospital 15 days due to a c-dif infection after 7 days. I lost about 40 lbs. but at 244 I needed to take some off. I still have a drain and occasional bad pain just below my breast bone. I think it's gas. My first round of chemo wasn't too bad, just tired and very sensative to cold. I'm determined to beat it. Best to all of you with it or supporting loved ones.

    Did you have any positives
    Did you have any positives in your nodes? I am almost 7 weeks out and feel pretty good. They took out a 4.5 cm tumor and said 1 of 8 nodes were positive. I will be finding out about chemo/radiation soon. How long do you have to do chemo? Any advise is helpful.
    Michelle
  • Mrandl
    Mrandl Member Posts: 3
    #11
    MichelleB83845 said:

    Did you have any positives
    Did you have any positives in your nodes? I am almost 7 weeks out and feel pretty good. They took out a 4.5 cm tumor and said 1 of 8 nodes were positive. I will be finding out about chemo/radiation soon. How long do you have to do chemo? Any advise is helpful.
    Michelle

    Positives sorry to be slow to respond.
    I did have 7 out of 12. I'm told they will only do chemo, don't need radiation. I also have two spots on my liver the surgeon found during surgery. According to the oncologist that is the biggest battle althoough my wonderful surgeon says: "don't worry about the liver, I'll take care of that if needed." I've had 3 rounds and this last one was really easy. Very few side effects other than tingling in the fingers and toes. Use a towel or something to get things out of the fridge. I'm on an infusion I can't pronounce or spell but also on xeloda. I am very positive about this drug and I am working to be positive about my situation and about my personal attitude. "The best is yet to be and I'm going to be cancer free."

    Bless you in your efforts. I'll try to be more attentive to this web site.
  • Ant041
    Ant041 Member Posts: 2
    #12
    Mrandl said:

    Positives sorry to be slow to respond.
    I did have 7 out of 12. I'm told they will only do chemo, don't need radiation. I also have two spots on my liver the surgeon found during surgery. According to the oncologist that is the biggest battle althoough my wonderful surgeon says: "don't worry about the liver, I'll take care of that if needed." I've had 3 rounds and this last one was really easy. Very few side effects other than tingling in the fingers and toes. Use a towel or something to get things out of the fridge. I'm on an infusion I can't pronounce or spell but also on xeloda. I am very positive about this drug and I am working to be positive about my situation and about my personal attitude. "The best is yet to be and I'm going to be cancer free."

    Bless you in your efforts. I'll try to be more attentive to this web site.

    duodenal cancer
    Hey Everyone, A little about me. I am 36 years young and I had a Whipple on Jan 11,2010 for a Duodenal (GIST) Tumor. I can say now (thru the grace of GOD)I feel Great! I am eating somewhat normal, Travel for my full time job and walk a lot for my part time Job, My 2 kids have me pretty busy with sports as well. As far as the surgery (I'll give you the short version)I wil not lie I was scared, but I think it went very well my surgery was 8 1/2 hours and I was in the hospital about 12 days, came home with a G tube and a J tube which I did not use and were out in a month. I have a great Wife who is a nurse which pushed me every step of the way and made sure I didn't give up and I ate small portions and I did the little things I needed to do. One little peice of advice make sure you walk in the hospital and keep your postisuer, it may hurt at first but it will help in the long run. I wish all of you the best and I will be on here often please don't hesitate to contact me with any questions or concerns. May God Bless all of you..

    Ant :)
  • will2survive
    will2survive Member Posts: 3
    #13
    Ant041 said:

    duodenal cancer
    Hey Everyone, A little about me. I am 36 years young and I had a Whipple on Jan 11,2010 for a Duodenal (GIST) Tumor. I can say now (thru the grace of GOD)I feel Great! I am eating somewhat normal, Travel for my full time job and walk a lot for my part time Job, My 2 kids have me pretty busy with sports as well. As far as the surgery (I'll give you the short version)I wil not lie I was scared, but I think it went very well my surgery was 8 1/2 hours and I was in the hospital about 12 days, came home with a G tube and a J tube which I did not use and were out in a month. I have a great Wife who is a nurse which pushed me every step of the way and made sure I didn't give up and I ate small portions and I did the little things I needed to do. One little peice of advice make sure you walk in the hospital and keep your postisuer, it may hurt at first but it will help in the long run. I wish all of you the best and I will be on here often please don't hesitate to contact me with any questions or concerns. May God Bless all of you..

    Ant :)

    duodenal cancer
    Hello,
    I had Whipple in June 2001, removed duodenum, part of pancreas, part of stomach, part of small intestines, part of colon, all the appendix and 3 large lymph nodes. The cancer was growing around the major artery. 9 hour surgery and Thank God at the best teaching hospital in St. Louis. I was in the hospital 26 days. Had chemo therapy, and no true protocol for duodenal cancer they gave me pancreas and stomach chemos basically followed by 8 or 12 weeks radiation (so far behind me now I don't remember exactly how long). I was 47 years old then. Other than the arch shaped scar on my stomach you'd never know, have no problems with eating and after about 2 years had gained all my weight back. During the 2 years of mis-diagnosis I had lost about 70 pounds and was pretty much on deaths door. Finally found the right place. My advise to anyone facing this would be to go to the largest teaching hospital in your area. People go to this hospital from the whole midwest area and I would say to anyone this is not the time to quibble about convenience. There was nothing at all on the internet about duodenal cancer then and I felt totally alone with it, I am glad there is something now. I just recently found as now have breast cancer (totally unrelated) so I just by chance found there are others out there!
    Good luck and God Bless you all!
  • will2survive
    will2survive Member Posts: 3
    #14
    gracie3459 said:

    Surviving a whipple
    I had my Whipple in Grand Rapids MI in May of 2006. I had a misdiagnosed Duodenal tumor that had spread to my Pancreas by the time it was accurately diagnosed. It was a Stage 3 Cancer at that point.

    I was in the hospital for 2 weeks. The staff labeled me the "poster child of the Whipple Procedure" and I told them that I would hate to have had a "normal" recovery. I had a drainage tube for about 2 months but that was manageable at home without outside care. That tube was to drain off leakage of pancreatic fluids into the abdominal cavity.

    I resumed regular diet after about 4 days in the hospital. Obviously, going from soft to regular as tolerated.

    I took advantage of having Acupuncture treatments which really helped relieve the pain. I had gotten into a pain deficit due to my epidural coming out on its own before I was sequenced onto IV meds.

    I was up and walking the halls (with much pain) but up and walking after the 4th or 5th day. This activity was what they said made my recovery as quick as it was. The pain was excruciating but just remember to get a new pain dosage on board your body and then take the walk.

    For the person that is looking to have this done. I can only say that it won't be any fun but if it keeps you alive it is worth it. I spent the past week end down hill skiing with my 3 grand daughters and will be traveling to Cheyenne WY to spend a week with my Grand sons on Tuesday.

    A short synopsis. I have had cancer 4 times plus one exploratory surgery to rule out diffinitively a Pancreas cancer back in the 80s. I had endometrial (uterine), colon rt sided, the duodenal and then another colon lt side 18 months after the duodenal. None of these were true metastases but due to what clinically presents as a genetic condition. This does not, at present, genetically blood test as genetic but we treat my body as if it was positive. I was 34 years old with an 11 year old and a 13 year old when I had my first surgery. I have been able to watch not only their lives but the arrival and growth of 6 grand children. So, get the best surgeon you can find and have it done. I don't know how much info is allowed on this site as to facilities and surgeons so I won't add anything else.

    surviving whipple
    Yes, I remember walking a lot, I would disconnect and connect my own stomach tube and bag, made them show me because I just wanted to get up and live. My one friend told me when came to visit with me I told her I had to walk or I would die, so we walked round and round the halls. It was funny because I didn't remember saying it but with the pain and the painkillers there was a lot I didn't remember the first couple weeks.
  • will2survive
    will2survive Member Posts: 3
    #15
    raidersfan29 said:

    duodenal cancer.
    my whipple is set for march 9th and im getting worried the rareity of the cancer and the severity of the surgery scares me can anyone give me words of incourgement to help me through this

    raidersfan29
    How are you doing from your surgery? We'd like to hear from you.
  • Haylez
    Haylez Member Posts: 6
    #16
    MichelleB83845 said:

    Did you have any positives
    Did you have any positives in your nodes? I am almost 7 weeks out and feel pretty good. They took out a 4.5 cm tumor and said 1 of 8 nodes were positive. I will be finding out about chemo/radiation soon. How long do you have to do chemo? Any advise is helpful.
    Michelle

    chemo
    My Mum had no positive nodes, but a tiny spot (4mm) on her liver, and because of the rareity of duodenal cancer, and the lack of good research on it, she opted to have chemo.
    They're calling is "insurance" chemo, to mop up anything microscopic that may be left behind. Her surgery went amazing with good margins etc.
    She just had her 3rd cycle of FOLFOX chemo, and is doing pretty good so far. She goes in once a fortnight for 3 hours, and then brings one drug home with her in a bottle connected to her picc line for two days, then goes back in and has it disconnected. She is very sensitive to the cold the two days following, and a little off her food. Then she has a couple of bad days on the 3rd and 4th day. Just really tired, a bit of it, slightly nauseas and no appetite. But then she comes pretty good, and has a good week before she goes back in again.
    Any more questions you have, please ask!
    Haylez
  • MichelleB83845
    MichelleB83845 Member Posts: 13
    #17
    will2survive said:

    duodenal cancer
    Hello,
    I had Whipple in June 2001, removed duodenum, part of pancreas, part of stomach, part of small intestines, part of colon, all the appendix and 3 large lymph nodes. The cancer was growing around the major artery. 9 hour surgery and Thank God at the best teaching hospital in St. Louis. I was in the hospital 26 days. Had chemo therapy, and no true protocol for duodenal cancer they gave me pancreas and stomach chemos basically followed by 8 or 12 weeks radiation (so far behind me now I don't remember exactly how long). I was 47 years old then. Other than the arch shaped scar on my stomach you'd never know, have no problems with eating and after about 2 years had gained all my weight back. During the 2 years of mis-diagnosis I had lost about 70 pounds and was pretty much on deaths door. Finally found the right place. My advise to anyone facing this would be to go to the largest teaching hospital in your area. People go to this hospital from the whole midwest area and I would say to anyone this is not the time to quibble about convenience. There was nothing at all on the internet about duodenal cancer then and I felt totally alone with it, I am glad there is something now. I just recently found as now have breast cancer (totally unrelated) so I just by chance found there are others out there!
    Good luck and God Bless you all!

    question
    What form of radiation did you have? I am due for radiation soon and am told that the 3-D therapy will destroy alot of my kidney function, but of course my insurance will not approve the other type that would cause less damage.

    Do you have any problems with your kidneys?

    Wish you the best
  • Mbraindawg
    Mbraindawg Member Posts: 1
    #18
    Haylez said:

    chemo
    My Mum had no positive nodes, but a tiny spot (4mm) on her liver, and because of the rareity of duodenal cancer, and the lack of good research on it, she opted to have chemo.
    They're calling is "insurance" chemo, to mop up anything microscopic that may be left behind. Her surgery went amazing with good margins etc.
    She just had her 3rd cycle of FOLFOX chemo, and is doing pretty good so far. She goes in once a fortnight for 3 hours, and then brings one drug home with her in a bottle connected to her picc line for two days, then goes back in and has it disconnected. She is very sensitive to the cold the two days following, and a little off her food. Then she has a couple of bad days on the 3rd and 4th day. Just really tired, a bit of it, slightly nauseas and no appetite. But then she comes pretty good, and has a good week before she goes back in again.
    Any more questions you have, please ask!
    Haylez

    Massive nausea
    My mom just had the whipple procedure on May 25th to remove a 3cm tumor on the head of her pancreas. She has recovered well from the surgery, except she cannot stop vomiting. She is nausious all the time and cannot keep any food down. She throws up bile. She was released two days ago, but had to be readmitted due to dehydration. She is gettin fed through j tube going into her small intestine. And has a drain gtube coming from her stomach. The dr does not know why her stomach is not moving food through it. They say it is still in paresis. Or paralyzed, but it has almostbeen three weeks. Has anyone else had this happen? I am worried she won't ever be able to eat. Thank you.
  • Haylez
    Haylez Member Posts: 6
    #19
    Mbraindawg said:

    Massive nausea
    My mom just had the whipple procedure on May 25th to remove a 3cm tumor on the head of her pancreas. She has recovered well from the surgery, except she cannot stop vomiting. She is nausious all the time and cannot keep any food down. She throws up bile. She was released two days ago, but had to be readmitted due to dehydration. She is gettin fed through j tube going into her small intestine. And has a drain gtube coming from her stomach. The dr does not know why her stomach is not moving food through it. They say it is still in paresis. Or paralyzed, but it has almostbeen three weeks. Has anyone else had this happen? I am worried she won't ever be able to eat. Thank you.

    My Mum had this, not quite
    My Mum had this, not quite as severely as your mums sounds though, and she got through it. It lasted probably a week, and she had to go back on the drip. same thing, her stomach wasnt emptying as it was still paralysed. She just had to take another step back, and be careful of what she ate, and how quickly she ate it. They also gave her maxalon, which is a drug that helps empty the stomach. That helped heaps, but mainly, it was just time. The stomach needed time to get working again!
    How is she going now?
  • lisasmith
    lisasmith Member Posts: 2
    #20
    Haylez said:

    My Mum had this, not quite
    My Mum had this, not quite as severely as your mums sounds though, and she got through it. It lasted probably a week, and she had to go back on the drip. same thing, her stomach wasnt emptying as it was still paralysed. She just had to take another step back, and be careful of what she ate, and how quickly she ate it. They also gave her maxalon, which is a drug that helps empty the stomach. That helped heaps, but mainly, it was just time. The stomach needed time to get working again!
    How is she going now?

    Duodenal Cancer and Multiple Myeloma
    Anyone have duodenal cancer after living with multiple myeloma cancer?
    Anyone have a whipple without a drainage tube put in?
    My husband had the whipple for duodenal cancer and 8 days later surgery to put in a drainage tube. I believe they have discharged him from the hospital too early and he has lost so much weight.
  • simkor
    simkor Member Posts: 17
    #21
    lisasmith said:

    Duodenal Cancer and Multiple Myeloma
    Anyone have duodenal cancer after living with multiple myeloma cancer?
    Anyone have a whipple without a drainage tube put in?
    My husband had the whipple for duodenal cancer and 8 days later surgery to put in a drainage tube. I believe they have discharged him from the hospital too early and he has lost so much weight.

    Drainage tube
    Hi,
    I hope your husband is doing ok & hasnt had anymore problems.

    My husband Simon had two drainage tubes & a T tube in his bile duct. They where put in when they did the whipples. They also had to insert a third drainage tube in after three weeks as he had a pool of fluid which caused a infection.

    Wishing you all the best

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