Surviving Duodenal Cancer

FightingDuodenal
FightingDuodenal Member Posts: 2 Member
edited February 2023 in Rare and Other Cancers #1
Hi. I'm a 54 yr old woman who was diagnosed with Stage IV (spread to liver and lungs) Duodenal Adenocarcinoma 1 year ago. I had a "partial" whipple in June 2009 and have been in chemotherapy since last July. My first six weeks of chemo were "alternative" treatments in a holistic hospital (I was too ill to have traditional chemo). Since Aug 2009, I've received chemo every two weeks--5 hrs at the hospital and then a take home bag plugged into my chest port for 2 more days. A LOT of chemo and no end in sight. I've had some major problems with side-effects, drug reactions, etc., not to mention losing over 60#, but as of now my cancer seems to be fairly stable. The main mass in the duodenum has remained the same size, ditto for the nodes in my lungs. The cancer in my liver has even shrunk a bit! :-) Best I can hope for I suppose. I've never met anyone (online or realtime) with duodenal cancer. My oncologist has previously treated duodenal cancer patients but nobody currently. I'd love to talk with anyone who has this cancer. Or, even the survivors of patients who lived a year or more beyond their initial diagnosis. In the meantime, if anyone has been recently diagnosed and has questions please don't hesitate to ask. I know how overwhelming it is to cope with a cancer diagnosis...especially one as rare as duodenal.
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Comments

  • MichelleB83845
    MichelleB83845 Member Posts: 13
    #2
    Duodenal Cancer
    Hello...

    I am fairly new to the battle of duodenal cancer. I am 32 and had the whipple done on March 15th. I had a 4.5 cm tumor with 1 of 8 lymph nodes involved. Mine is at stage 3.

    I am about to start radiation and chemo soon (been appealing with the insurance co for a less damaging radiation therapy with no luck). Did you do any radiation? If so was it the 3 dimensional or IMRT? My oncologist said that the 3-D will cause quite a bit of damage to my right kidney and I am a bit worried. The chemo doc said that I am by far his youngist patient with this kind of cancer (almost 20 years), I dont know if I find that comforting or not!! I have been told that I will do radiation for 28 days (5 days a week) then 6 months of chemo. I will also be taking a chemo pill during radiation.

    How do they test you to check the cancer? I have been told there is no way of actually checking it so I am doing "insurance" therapy to get any free floating cancer cells that may or may not be there. I have a hard time wraping my head around the fact that I actually feel really good only to be making myself sick for the unknown.

    I hope to hear back from you.

    Michelle
  • FightingDuodenal
    FightingDuodenal Member Posts: 2 Member
    #3
    MichelleB83845 said:

    Duodenal Cancer
    Hello...

    I am fairly new to the battle of duodenal cancer. I am 32 and had the whipple done on March 15th. I had a 4.5 cm tumor with 1 of 8 lymph nodes involved. Mine is at stage 3.

    I am about to start radiation and chemo soon (been appealing with the insurance co for a less damaging radiation therapy with no luck). Did you do any radiation? If so was it the 3 dimensional or IMRT? My oncologist said that the 3-D will cause quite a bit of damage to my right kidney and I am a bit worried. The chemo doc said that I am by far his youngist patient with this kind of cancer (almost 20 years), I dont know if I find that comforting or not!! I have been told that I will do radiation for 28 days (5 days a week) then 6 months of chemo. I will also be taking a chemo pill during radiation.

    How do they test you to check the cancer? I have been told there is no way of actually checking it so I am doing "insurance" therapy to get any free floating cancer cells that may or may not be there. I have a hard time wraping my head around the fact that I actually feel really good only to be making myself sick for the unknown.

    I hope to hear back from you.

    Michelle

    duodenal cancer
    Thanks for the reply Michelle. I can see from your post that things are rather confusing. Have you had a 2nd opinion (preferably from a good cancer institute)? One that could help you with your insurance fight?

    My cancer is a stage IV. It's spread beyond the duodenum to the liver and my lungs. They won't use radiation because there is just too much cancer to make it beneficial.

    The way they "check" my cancer is they use CT scans. I've also heard of them using PET scans as well but mine shows up well on the CT scans. They can track how much it's spread (or shrunk). Usually every 3 months. Thankfully, my chemo seems to be holding the cancer as there hasn't been any growth in over 6 months! :-)

    I haven't heard anything about kidney damage from my chemo. Originally oxilaplatin,5FU and Leucovorin called FULFOX regime. I became deathly allergic to the oxilaplatin so they changed it to Irinotecan called FULFURI regime. I'm sure there must be some damage to all organs considering how many treatments I've had in the past 10 months. But, nothing specifically targeting my kidneys.

    I completely understand your reluctance to make yourself sick when you don't feel like you are now. I've struggled with that for quite a while. Since I've lost 62# in 6 months people are constantly telling me how good I look. In fact, the oncologist told me the other day that if he didn't know how sick I was he would never be able to tell by looking at me. I look too healthy. Obviously, looks can be very deceiving.

    You're fortunate that they found your cancer early enough to do radiation and chemo. That and your young age should serve you well as you move forward to fight this horrific disease. Good luck!

    Cindy
  • carriegubr
    carriegubr Member Posts: 1
    #4
    MichelleB83845 said:

    Duodenal Cancer
    Hello...

    I am fairly new to the battle of duodenal cancer. I am 32 and had the whipple done on March 15th. I had a 4.5 cm tumor with 1 of 8 lymph nodes involved. Mine is at stage 3.

    I am about to start radiation and chemo soon (been appealing with the insurance co for a less damaging radiation therapy with no luck). Did you do any radiation? If so was it the 3 dimensional or IMRT? My oncologist said that the 3-D will cause quite a bit of damage to my right kidney and I am a bit worried. The chemo doc said that I am by far his youngist patient with this kind of cancer (almost 20 years), I dont know if I find that comforting or not!! I have been told that I will do radiation for 28 days (5 days a week) then 6 months of chemo. I will also be taking a chemo pill during radiation.

    How do they test you to check the cancer? I have been told there is no way of actually checking it so I am doing "insurance" therapy to get any free floating cancer cells that may or may not be there. I have a hard time wraping my head around the fact that I actually feel really good only to be making myself sick for the unknown.

    I hope to hear back from you.

    Michelle

    Michelle,
    I am also 32 (33rd
    Michelle,

    I am also 32 (33rd birthday is in 3 weeks!) and I was diganosed with duodenal cancer in August of last year. I had a Whipple just a few weeks later, also in August. I also had one lymph node positive, out of 20 resected. I started radiation in late September and had 31 treatments (6 weeks and 1 day) and took Xeloda during radiation. In all honesty, this was the worst of it for me. I was really nauseated and had no appetite with the Xeloda and I lost about 20 pounds. Radiation finished up in early November and I was able to go back to work. I started chemo - also FOLFOX - in January and finished 8 cycles (4 months). My follow up CAT scan last month was clean, and am now cancer free!

    I won't lie, it sucks. All of it sucks. The chemo wasn't really so bad except having the pump for 2 days is kind of a pain. Once radiation was over, I really didn't have much trouble and I was able to continue working all the way through the chemo.

    I hope that all goes well for you in your treatment.

    I wish I had found this website 10 months ago.

    Carrie
  • MichelleB83845
    MichelleB83845 Member Posts: 13
    #5
    FightingDuodenal said:

    duodenal cancer
    Thanks for the reply Michelle. I can see from your post that things are rather confusing. Have you had a 2nd opinion (preferably from a good cancer institute)? One that could help you with your insurance fight?

    My cancer is a stage IV. It's spread beyond the duodenum to the liver and my lungs. They won't use radiation because there is just too much cancer to make it beneficial.

    The way they "check" my cancer is they use CT scans. I've also heard of them using PET scans as well but mine shows up well on the CT scans. They can track how much it's spread (or shrunk). Usually every 3 months. Thankfully, my chemo seems to be holding the cancer as there hasn't been any growth in over 6 months! :-)

    I haven't heard anything about kidney damage from my chemo. Originally oxilaplatin,5FU and Leucovorin called FULFOX regime. I became deathly allergic to the oxilaplatin so they changed it to Irinotecan called FULFURI regime. I'm sure there must be some damage to all organs considering how many treatments I've had in the past 10 months. But, nothing specifically targeting my kidneys.

    I completely understand your reluctance to make yourself sick when you don't feel like you are now. I've struggled with that for quite a while. Since I've lost 62# in 6 months people are constantly telling me how good I look. In fact, the oncologist told me the other day that if he didn't know how sick I was he would never be able to tell by looking at me. I look too healthy. Obviously, looks can be very deceiving.

    You're fortunate that they found your cancer early enough to do radiation and chemo. That and your young age should serve you well as you move forward to fight this horrific disease. Good luck!

    Cindy

    Hi Cindy
    I thought about talking to someone else but I know that my oncologist is one of the best in the area, and for a second opinion I would have to travel to Seattle, Wa which is about 8 hours away. My insurance is pretty set on their policy that treatment is investigational and they will not cover it. I decided instead of fighting them and giving my body the chance to become infected with more cancer, I will do the treatments that are covered and pray for the best. My blood work is in normal range so that is good, but doesnt really say if I still have cancer or not.

    Are you taking any supplements? I am taking pro-biotics, and drinking paur d' arco tea and a couple other things. I dont know if they help or not but they cant hurt and will help with flushing the drugs out. I also drink fresh carrot/apple juice almost daily. Some of the things I've read said this will help.

    Best wishes for you.

    Michelle
  • MichelleB83845
    MichelleB83845 Member Posts: 13
    #6
    carriegubr said:

    Michelle,
    I am also 32 (33rd
    Michelle,

    I am also 32 (33rd birthday is in 3 weeks!) and I was diganosed with duodenal cancer in August of last year. I had a Whipple just a few weeks later, also in August. I also had one lymph node positive, out of 20 resected. I started radiation in late September and had 31 treatments (6 weeks and 1 day) and took Xeloda during radiation. In all honesty, this was the worst of it for me. I was really nauseated and had no appetite with the Xeloda and I lost about 20 pounds. Radiation finished up in early November and I was able to go back to work. I started chemo - also FOLFOX - in January and finished 8 cycles (4 months). My follow up CAT scan last month was clean, and am now cancer free!

    I won't lie, it sucks. All of it sucks. The chemo wasn't really so bad except having the pump for 2 days is kind of a pain. Once radiation was over, I really didn't have much trouble and I was able to continue working all the way through the chemo.

    I hope that all goes well for you in your treatment.

    I wish I had found this website 10 months ago.

    Carrie

    Thanks Carrie
    Thankyou for writing. It is nice to know that there is someone who has been through it and has had the same treatment that I am getting. I am on my 8th treatment and so far everything is ok. I am tired and get the yucks for a bit after I take the xeloda but am able to eat. I drive 2 hours (100 miles) each way just to get radiation for 15 minutes and I think that wears me out the most. Did you get 3-D or the IMRT?
    I dont know yet what chemo my doc will use. He is waiting on the results of the genetic testing. I know it will be Folfox or Folfuri(sp?). I thought it was 6 months after radiation but he said that it will be more like 5 months and I dont even know how many times I will be infused. Guess I better ask next time huh?
    How often do you have a CAT scan?

    Sounds like you are a positive person, and I truly believe that is alot of the battle. I wish you all the best and hope to hear from you again.

    Michelle
  • gteets
    gteets Member Posts: 1
    #7
    carriegubr said:

    Michelle,
    I am also 32 (33rd
    Michelle,

    I am also 32 (33rd birthday is in 3 weeks!) and I was diganosed with duodenal cancer in August of last year. I had a Whipple just a few weeks later, also in August. I also had one lymph node positive, out of 20 resected. I started radiation in late September and had 31 treatments (6 weeks and 1 day) and took Xeloda during radiation. In all honesty, this was the worst of it for me. I was really nauseated and had no appetite with the Xeloda and I lost about 20 pounds. Radiation finished up in early November and I was able to go back to work. I started chemo - also FOLFOX - in January and finished 8 cycles (4 months). My follow up CAT scan last month was clean, and am now cancer free!

    I won't lie, it sucks. All of it sucks. The chemo wasn't really so bad except having the pump for 2 days is kind of a pain. Once radiation was over, I really didn't have much trouble and I was able to continue working all the way through the chemo.

    I hope that all goes well for you in your treatment.

    I wish I had found this website 10 months ago.

    Carrie

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets
  • cowgirl12
    cowgirl12 Member Posts: 1
    #8
    gteets said:

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets

    Duodenal cancer
    Hello,

    I'm 64 & have always been very healthy, but just had a large early-stage tumor removed from ampullary area of colon using ERCP. I think that's the same general area as duodenum. I still have ampullary cancer & will have the Whipple procedure in a few weeks.

    I am extremely interested in how to find the best doctors and facilities. I'm in a lot of pain from the resection.

    Thank you all for being there.

    Sandy
  • nsd60
    nsd60 Member Posts: 4
    #9
    gteets said:

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets

    duedenal cancer
    My husband age 48 was diagnosed with stage 3 duedenal cancer. He had the whipple on April 28th 2011 and will start Chemo (oxiplatin and xeloda) on Monday. Any advice? Any survivors of stage 3 duedenal cancer?
  • nsd60
    nsd60 Member Posts: 4
    #10
    gteets said:

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets

    cancer
    My husband is 7 weeks out from his whipple -he had stage 3 duedenal cancer and is 48 years old. he will have 6 months of chemo and one month radiation. What stage cancer was your father?
  • artis54
    artis54 Member Posts: 7
    #11
    Duodenal Cancer Stage IV
    I was recently diagnosed with stage iv duodenal cancer. I had a bowel obstruction that turned out to be a tumor. When they went in to remove the remainder of the tumor they found that I had thousands of implants throughout my stomach. I am now waiting to start chemo and have the HIPEC procedure done. Please any feed back on your experience would be helpful.

    Regards
  • MichelleB83845
    MichelleB83845 Member Posts: 13
    #12
    gteets said:

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets

    thankyou
    Thankyou for the encouragement!! It is nice to know that this cancer can be beat!!! Also a BIG thankyou for starting an awareness to this cancer. It is so hard to find any info on, and the things you read online and what you hear from the staff at the dr.'s office are two different things. I actually had a nutritionist tell me that sugar had nothing to do with cancer!! Really??? Not what I have read. Good luck to you on your goals for awareness!!!
  • DaughterForDad
    DaughterForDad Member Posts: 5
    #13
    Thank you - would love to get some information from you!
    First of all, thank you for reaching out and for your encouraging feedback regarding your prognosis. I'm thrilled to hear your cancer is stable. I can imagine how challenging this past year has been for you, both physically and emotionally.

    My Dad was diagnosed with primary Duodenal cancer with metastatic lesions on the liver at the end of April, following a polyp remove that initially was declared benign. It was only during a subsequently scheduled whipple procedure that surgeons discovered the malignancies, and opted not to proceed with the whipple, nor remove the primary tumor. He needed to rebuild some strength in order to undergo recommended Chemo treatments, which I believe he began several weeks later, in June.

    During this treatment, another blockage was discovered (I'm not sure where), and two unproductive endoscopy procedures followed. His oncologist at a VERY prominent Cancer Hopsital recommended a second-line treatment, but decided against administering it to him upon his arrival for it, because she felt he hadn't yet built up enough strength back from the previous two procedures.

    She also added he should "start thinking about his quality of life" options. Understandably, he felt "abandoned" by his doctor.

    He is no longer a patient with that oncologist.

    Now, my Dad is a fighter. He has a will more powerful than anyone I've known on the planet, and though his cancer is at times VERY taxing both physically and emotionally, he is RESOLVED to LIVE. Just because Duodenal cancer is rare, doesn't mean the battle can't be won. With all of you here, sharing your stories and proof of survival (especially those of you still on the upward mend), I feel empowered to reinforce my Dad's confidence that he CAN, too.

    Right now, we have inquiries into a surgeon who has performed several HIPEC procedures.

    But I am URGENTLY seeking more treatment options for my Dad. I would SINCERELY APPRECIATE ANY information you could give me regarding your OWN Oncologist, treatment types, and WHERE you've been treated. PLEASE respond at your earliest convenience, either right here (so others can benefit), or to me directly: mountaingirl100@aol.com

    Thank you so much, and I wish you continued healing.

    Sincerely,
    Daughter for Dad
  • DaughterForDad
    DaughterForDad Member Posts: 5
    #14
    artis54 said:

    Duodenal Cancer Stage IV
    I was recently diagnosed with stage iv duodenal cancer. I had a bowel obstruction that turned out to be a tumor. When they went in to remove the remainder of the tumor they found that I had thousands of implants throughout my stomach. I am now waiting to start chemo and have the HIPEC procedure done. Please any feed back on your experience would be helpful.

    Regards

    Your HIPEC Treatment
    Hello, Artis:

    I hope you've had your treatment and this note finds you looking forward to recovery.

    We, too are hoping to find an oncologist who feels my Dad is a candidate for the procedure. Dad (he just turned 69) was diagnosed with duodenal cancer (with some lesions on the liver and in the region), and his first round of chemo didn't seem to help toward his recovery.

    PLEASE do not be discouraged - even my Dad has known others who've battled cancer for whom the first line of treatment doesn't yield wanted results -- and they're living their lives. Being positive, eating well, and having a good support system works WONDERS with treatment!

    Please see my comment to anther poster: http://csn.cancer.org/node/193733#comment-1095707
    I'm hoping you'll share who your Oncologist/HIPEC surgeon is, and what your treatment regimen is and how your experience has been. We are urgently trying to find the best option to give Dad back his strength and his health.

    I would so appreciate your feedback - as soon as possible. You can respond here (so others can benefit), or to me directly: mountaingirl100@aol.com

    Thank you, and get well soon.
  • DaughterForDad
    DaughterForDad Member Posts: 5
    #15
    carriegubr said:

    Michelle,
    I am also 32 (33rd
    Michelle,

    I am also 32 (33rd birthday is in 3 weeks!) and I was diganosed with duodenal cancer in August of last year. I had a Whipple just a few weeks later, also in August. I also had one lymph node positive, out of 20 resected. I started radiation in late September and had 31 treatments (6 weeks and 1 day) and took Xeloda during radiation. In all honesty, this was the worst of it for me. I was really nauseated and had no appetite with the Xeloda and I lost about 20 pounds. Radiation finished up in early November and I was able to go back to work. I started chemo - also FOLFOX - in January and finished 8 cycles (4 months). My follow up CAT scan last month was clean, and am now cancer free!

    I won't lie, it sucks. All of it sucks. The chemo wasn't really so bad except having the pump for 2 days is kind of a pain. Once radiation was over, I really didn't have much trouble and I was able to continue working all the way through the chemo.

    I hope that all goes well for you in your treatment.

    I wish I had found this website 10 months ago.

    Carrie

    Carrie -- VERY GOOD NEWS!! Urgent - Info. appreciated, please.
    Carrie,
    I can't begin to imagine the ordeal you've personally gone through on your road to recovery, but I am SO HAPPY to hear you BEAT this. Thank God.

    My Dad's recently been diagnosed with duodenal cancer, and from the start, a very prominent oncologist told my Dad his goal should be "containment," not remission. Because it is rare and his oncologist wasn't entirely optimistic following discouraging results of his first chemo treatment, we are trying to help Dad get the immediate care he needs from a new oncologist who's had success with duodenal cancer and will be a POSITIVE influence on his recovery.

    Can you please provide any info. you're willing to share about whom you sought treatment from, what the regimen was (I'm jotting down FOLFOX)?

    Thank you so much. You can reply here (so others can benefit) or directly to me if you prefer: mountaingirl100@aol.com.

    You can read more about my Dad's situation here:
    http://csn.cancer.org/node/193733#comment-1095707
  • DaughterForDad
    DaughterForDad Member Posts: 5
    #16
    gteets said:

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets

    Gteets - VERY encouraging. THANK YOU! Info. Appreciated!
    Your HEADLINE has reinforced my hope for my own Dad's recovery. I'm so thrilled your Dad's thriving.

    Would you PLEASE let us know who your Dad's oncologist was, and any info. you can provide regarding treatment specifics?

    My Dad is 69, was diagnosed 3 months ago with advanced duodenal cancer and is searching for another line of treatment with an oncologist who will be more aggressive in fighting the disease with him.

    You can reply here (I'm new to this forum so I don't know whether there is email interaction), or you can email me directly: mountaingirl100@aol.com

    Thank you, and thank GOD for your Dad's good health.
    Sincerely,
    My Dad's Daughter
    http://csn.cancer.org/node/193733#comment-1095707 - my post where you can learn more about my Dad's case.
  • sftball2385
    sftball2385 Member Posts: 2
    #17
    Duodenal Cancer
    Daughter for Dad or Artis,

    If you could please share the information on where and the doctor who performs HIPEC's treatment would be greatly appreciated! My mom was diagnosed with duodenal cancer and looking for any & all types of treatment to help.

    Thank you!
  • sftball2385
    sftball2385 Member Posts: 2
    #18
    Duodenal Cancer
    Daughter for Dad or Artis,

    If you could please share the information on where and the doctor who performs HIPEC's treatment would be greatly appreciated! My mom was diagnosed with duodenal cancer and looking for any & all types of treatment to help.

    Thank you!
  • DaughterForDad
    DaughterForDad Member Posts: 5
    #19
    sftball2385 said:

    Duodenal Cancer
    Daughter for Dad or Artis,

    If you could please share the information on where and the doctor who performs HIPEC's treatment would be greatly appreciated! My mom was diagnosed with duodenal cancer and looking for any & all types of treatment to help.

    Thank you!

    HIPEC: Sftball 2385
    Hello, Sfball2385:

    This is the direct link to the HIPEC Surgeon resource site. Dr. KIRAN TURAGA in Wisconsin was the token HIPEC surgeon open to the possibility that it could be performed for duodenal cancer, though not typically intended for that type.

    http://www.hipectreatment.com/documents/cancerstreated.php

    Keep praying for restored health and do not give up on finding the best treatment for your Mom.

    With a heavy heart,
    Daughter for Dad.
  • goingtobeatthis
    goingtobeatthis Member Posts: 3
    #20
    gteets said:

    My Dad has survived 5 years next month
    My dad, now 63, was diagnaosed with duodenal cancer 5 years ago and had a Whipple done which was followed by 8 weeks of chemo and radiation. 2 months ago he was diagnosed with diabetes due to the lower output of insulin created by his surgically altered anatomy. He has spent the last 5 years learning what to eat and when to eat in order to limit the amount of sickness the re-designed gastric system produces. He returned to his retirement Job 7 moths after the procedure, he drives a bus at Disney World, but has had to ensure his work schedule match his sickness schedule. We thank God that he is wiht us everyday and we do our best to share his burden. With such limited information and resoureces available for this rare type of cancer every step was a difficult step in the dark.

    Like I said, he is a 5 year survivor and is still cancer free; thank you, God and the medical staff who have cared for him.

    I am currently creating a non-profit organization dedicated, in the shrot term, to awarenes and education regarding duodenal cancer. We are far from rich and the organization will start slow, but friends and family have agreed to donate time (and when possible) money to get this up and running. I would love to get any information you have relating to your experience and your doctors and the treatments any survivor has recieved. A VER VERY long term goal is to actually raise enough awareness and money to help fund research into treatments of this cancer.

    I wish you all well and I will keep you all posted as to the progress of the organization.

    Sincerely,
    G. T. Teets

    40 year old husband
    40 year old husband diagnosed with stage 3 6.5cm duodenal cancer. Margins clear after Whipple procedure 5 weeks ago. 2 of 21 lymph nodes positive.

    G.T. TEETS... please let me know what chemo and radiation your father did. Our oncologist recommended FOLFOX and the Radiation oncologist thought radiation would be to risky to his other organs.

    Any info would be VERY appreciated

    You can email me directly at danksm@hotmail.com

    I'm sooo happy your father is doing well. Hoping to have the same result for my husband.

    Thank You,
    M
  • goingtobeatthis
    goingtobeatthis Member Posts: 3
    #21
    carriegubr said:

    Michelle,
    I am also 32 (33rd
    Michelle,

    I am also 32 (33rd birthday is in 3 weeks!) and I was diganosed with duodenal cancer in August of last year. I had a Whipple just a few weeks later, also in August. I also had one lymph node positive, out of 20 resected. I started radiation in late September and had 31 treatments (6 weeks and 1 day) and took Xeloda during radiation. In all honesty, this was the worst of it for me. I was really nauseated and had no appetite with the Xeloda and I lost about 20 pounds. Radiation finished up in early November and I was able to go back to work. I started chemo - also FOLFOX - in January and finished 8 cycles (4 months). My follow up CAT scan last month was clean, and am now cancer free!

    I won't lie, it sucks. All of it sucks. The chemo wasn't really so bad except having the pump for 2 days is kind of a pain. Once radiation was over, I really didn't have much trouble and I was able to continue working all the way through the chemo.

    I hope that all goes well for you in your treatment.

    I wish I had found this website 10 months ago.

    Carrie

    Carrie, i'm so happy for you
    Carrie, i'm so happy for you and it's nice to finally hear that someone BEAT this terrible disease.

    My husband had the whipple 5 weeks ago and a 6.5 cm tumor was removed,"margins were clear". He had 2 of 21 lymph nodes test positive. His radiation oncologist said the risks outweighed the benefits so he did not recommend radiation due to damaging his good organs in the process. Chemo oncologist is starting the 48hr, every other week for 6 mos FOLFOX treatment next week.

    I'm wondering if any of your organs have been damaged by the radiation and what your dr. said regarding this. Any other info would be wonderful.

    Thank you so much,

    Marianne
    danksm@hotmail.com

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