Surviving Duodenal Cancer

245

Comments

  • nsd60
    nsd60 Member Posts: 4
    #22
    Duodenal cancer
    Hi,
    I just wanted to know how you are doing? My husband was diagnosed in april 2011 and had a Whipple. He is on his 6th round out of 8 of chemo. Good luck to you!
  • mhere4u65
    mhere4u65 Member Posts: 2
    #23
    duodenal cancer
    Hi Everyone
    I am 65 years old. I was diagnosed with duodenal cancer a year ago and survived a whipple procedure. I had already lost about 45 lbs because I was misdiagonosed at first hospital I was in They took out a good part of the duodenum, part of the lower part of my stomack and the head of the pancreas When they first told me I had cancer at the second hospital the first thing I thought of was my family The doctor did not expect me to survive the surgery
    I came out of the surgery fine and as my nutrition began to improve so did my recovery
    They told my family that I have stage 4 in the duodenum and stage 3 in the head of the pancreas I recently had a CT scan again and they found a tumor on my liver and another larger tumor behind the pancreas My treatment is also complicated by thalesemia and neurofrimotosis I which causes complications with my blood work and possible blockages. I feel like one of the lucky ones The chemo has been stopped because of complications with my blood and my liver. I take each day as blessing and I also have a beautiful family of 3 daughters and 4 grandchildren that fill my life. I have much to thankful for.
  • concretekenny
    concretekenny Member Posts: 1
    #24
    mhere4u65 said:

    duodenal cancer
    Hi Everyone
    I am 65 years old. I was diagnosed with duodenal cancer a year ago and survived a whipple procedure. I had already lost about 45 lbs because I was misdiagonosed at first hospital I was in They took out a good part of the duodenum, part of the lower part of my stomack and the head of the pancreas When they first told me I had cancer at the second hospital the first thing I thought of was my family The doctor did not expect me to survive the surgery
    I came out of the surgery fine and as my nutrition began to improve so did my recovery
    They told my family that I have stage 4 in the duodenum and stage 3 in the head of the pancreas I recently had a CT scan again and they found a tumor on my liver and another larger tumor behind the pancreas My treatment is also complicated by thalesemia and neurofrimotosis I which causes complications with my blood work and possible blockages. I feel like one of the lucky ones The chemo has been stopped because of complications with my blood and my liver. I take each day as blessing and I also have a beautiful family of 3 daughters and 4 grandchildren that fill my life. I have much to thankful for.

    Newbie On Board (1st post)
    Hi all, I am new to this board but I am not new to the battle with cancer. this will be the third time I have faced the battle with cancer I am a survior of colorectal cancer. the first time. was 05 and they removed part of my colon and I was clean for 15 months. the docs went back in and removed the rest of my colon because the cancer had returned. Since that time I have bean good for over 3 years all the time being watched very closely as they think I am one that has Lynch syndrome I think that is what it is called. I hsve a lot of things going thur my head right now. I started getting sick again mid Sept. of this year. Long story short I have been told I have cancer back but this time it is in duodenal and going to have Whipple done on the 28th of Dec. So needless to say I am curious about everything. I am so glad I found this board because from past experience I know how important support is thur all of this. So much about that. here is a little bit about me I am a male 60 years old have a wife, 4 grown daughters, and 6 grandkids. I live in Il. I have drove a concrete truck for the past 35 years (hence my board name) I told my wife this bout is going to retire me. I was going to wait till I was 62. I have been in the Teamster all that time and my pension is in tack, so it is time to turn my keys in, and foucus on family and this battle. Again I am so glad to have found ya'll. Talk to ya'll soon!!!
  • amorantin
    amorantin Member Posts: 1
    #25
    A little twist in my experience
    I'm 44 and have had a slightly different path so far but with a good result. Nov. 27, 2010 I went into the ER for pain which ended up being diagnosed as a duodenal ulcer. March 2011, tests showed that I had cancer there. In the next month, it was found to have extended out in front of the pancreas and was wrapped around the artery and vein which prevented surgery. I then started chemo (Folfox) and then had radiation with Zolada. This all ended in late August so as to see the results a month later. By the end of September, the surgeon decided he wanted to do surgery but termed it exploratory as he needed to get a better look to ensure he could do the Whipple Procedure. Surgery was October 27 and lasted 8 hours. I was so thankful and blessed that I woke up and also to find out that the work was done. I was in the hospital for 10 days. It was determined towards the end of that stay that I had a pancreatic leak so I had begun receiving TPN as my sole source of nourishment with no food or drink for 6 weeks. Found out from the surgeon that the margins were good and lymph nodes all negative. I started eating 2 weeks ago and expect to return to work next week. Oncologist suggests a couple of months of additional chemo just in case but said it was up to me - would rather spare me of future thoughts of "I wish I had done that". Would be lower dose of oxylplatin (not sure of spelling) to prevent too much recurrence of the neuropathy and also take Zeloda. I've had all of my cancer care at Georgetown University Hospital in D.C. The oncologist is Dr. Louis Weiner and the surgeon is Lynt Johnson - the Chairman of Surgical Services who specializes in liver and pancreatic surgery.

    Kevin
  • artis54
    artis54 Member Posts: 7
    #26
    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
    I have stage iv duodenal cancer and live in orlando. Can you please tell me who yor dads onocologist is. I am not a candidate for the whipple.
  • artis54
    artis54 Member Posts: 7
    #27
    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
    DR LEVINE IN WAKE FORREST, NC
  • artis54
    artis54 Member Posts: 7
    #28
    DaughterForDad said:

    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

    Hello
    How is your dad doing. Did he get the HIPEC
  • mfloro
    mfloro Member Posts: 1
    #29
    nsd60 said:

    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?

    Duodenal cancer
    i was diagnosed in 2009 and had a subtotal gastrectomy followed by chemo and radiation. I have been in remission but have started to have issues with heartburn, fatigue, gastric reflux, nausea. Has your husband had any similar issues?
  • 1955topresent
    1955topresent Member Posts: 6
    #30
    Duodenal Cancer not operatable
    Hi I am a 56 year old woman who was diagnosed in Dec 2011 with Pancreatic stage IV cancer. I later was told I was misdiagnosed and I had duodenal cancer-Unfortunately the tumor had been around for awhile and it would have to been shrunk in order to be a candidate for surgery. So after 25 sessions of chemo and radiation-I was told the tumor had grown and had now spread to my liver. I cannot tell you how devasted this has left me. I agreed to see a doc tomorrow about direct liver therapy. And my onocologist want to do secondarly line chemo for the orginal tumor. My prognosis is not great I just hope to see my son get married maybe in the next 2 years. And I am very frightened about the pain I might have to endure. I am so angry that I could have a tumor growing inside for a few years I was told and never knew it. I am a diabetic so I saw the doctor every 3 months-I did not have symptoms till last summer- some back pain and stomach pain. Than last fall the tumor completely blocked my digestion tract and the vomiting started. I am 55# lighter and am so frightened. Any suggestions out there.
  • 1955topresent
    1955topresent Member Posts: 6
    #31
    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

    Don't give up
    Hi From reading your comment I feel we are in the same boat-not able to have surgery-how are you doing now?
  • nsd60
    nsd60 Member Posts: 4
    #32
    surviving duodenal cancer with liver mets
    I have not posted to this board in awhile. There is a duodenal cancer group on facebook and yahoo.com. This is in response to the person who posted on June 6th 2012. I am so sorry to hear about your diagnosis. My husbands cancer spread to his liver after 8 rounds of oxilplatin and xeloda. He had a whipple on April 2011. My suggestion to you is to get on a different chemo. Maybe Fofori (irinotican and 5fu) along with avastin. See if that shrinks the tumors. We have had chemoembolization and sir spheres. The sir sphere treatment was on April 5th and as of scans May 11th it was showing that his tumors are starting to die (he has 6 in his rt lobe). My husband Larry is doing ok-he has had a lot of infections and we have been in the hospital 3 times in months due to different infections. He had his porte removed last week and it will be put back in once the infection clears. I also suggest having a biopsy done of your liver tumor to determine what chemo drugs would work. If you have the KRAS gene then erbutix might work for you-otherwise avastin. Go to Beatlivertumors.org to see survival stories. People have survived this. I hope we will be one of them-all of us on this board! nanci
  • 1955topresent
    1955topresent Member Posts: 6
    #33
    nsd60 said:

    surviving duodenal cancer with liver mets
    I have not posted to this board in awhile. There is a duodenal cancer group on facebook and yahoo.com. This is in response to the person who posted on June 6th 2012. I am so sorry to hear about your diagnosis. My husbands cancer spread to his liver after 8 rounds of oxilplatin and xeloda. He had a whipple on April 2011. My suggestion to you is to get on a different chemo. Maybe Fofori (irinotican and 5fu) along with avastin. See if that shrinks the tumors. We have had chemoembolization and sir spheres. The sir sphere treatment was on April 5th and as of scans May 11th it was showing that his tumors are starting to die (he has 6 in his rt lobe). My husband Larry is doing ok-he has had a lot of infections and we have been in the hospital 3 times in months due to different infections. He had his porte removed last week and it will be put back in once the infection clears. I also suggest having a biopsy done of your liver tumor to determine what chemo drugs would work. If you have the KRAS gene then erbutix might work for you-otherwise avastin. Go to Beatlivertumors.org to see survival stories. People have survived this. I hope we will be one of them-all of us on this board! nanci

    I don't know whats left
    Thank you for your response. I know my doc wants to start a secondary line of chemo not sure what. And the liver doc want to put pellets of chemo into my liver and wait a month or so to see if it worked. But I was not aware that a biopsy would be able to let them know if the drugs would work. I don't think I can stand going through the treatment for the end result to be so poor. Out of desperation I was thinking of going to see a doc at Cancer Treatment Center of American in Zion IL. I have read both good and bad about them. But I am the kind of patient they want-advanced and not responding to treatment. I was nto able to have the whipple surgery because of tumor is so advanced and my only hope was it shrinking but it that time it spread to the liver-they think 2 or 3 liasion about 2 cent. I am starting to experiene alot of pain on my right side lately. I am more concerned that I have been out of treatment so long (six weeks). I wish you and your husband the best of luck and my prayers are with you. Today would of been my 34th anniversary but my husband died 18 years ago. My son has moved back home to help me out. I hope to hear from you again with only good news about your situation
  • artis54
    artis54 Member Posts: 7
    #34
    1955topresent said:

    Duodenal Cancer not operatable
    Hi I am a 56 year old woman who was diagnosed in Dec 2011 with Pancreatic stage IV cancer. I later was told I was misdiagnosed and I had duodenal cancer-Unfortunately the tumor had been around for awhile and it would have to been shrunk in order to be a candidate for surgery. So after 25 sessions of chemo and radiation-I was told the tumor had grown and had now spread to my liver. I cannot tell you how devasted this has left me. I agreed to see a doc tomorrow about direct liver therapy. And my onocologist want to do secondarly line chemo for the orginal tumor. My prognosis is not great I just hope to see my son get married maybe in the next 2 years. And I am very frightened about the pain I might have to endure. I am so angry that I could have a tumor growing inside for a few years I was told and never knew it. I am a diabetic so I saw the doctor every 3 months-I did not have symptoms till last summer- some back pain and stomach pain. Than last fall the tumor completely blocked my digestion tract and the vomiting started. I am 55# lighter and am so frightened. Any suggestions out there.

    chemo
    anyone using folfiri and what are your results and side effects.
  • wildgoose17
    wildgoose17 Member Posts: 1
    #35
    artis54 said:

    chemo
    anyone using folfiri and what are your results and side effects.

    Folfiri
    I have recently started on Folfiri on a twice-monthly basis.

    I was diagnosed with Stage IV just about a year ago at age 67. Longstanding vague problems with gas and bloating (diagnosed as IBS) and increasing fatigue (no sleep apnea and thyroid function okay with levothtroxine so take Paxil for depression...I wouldn't because I insisted that the depression was due to fatigue and not vice versa) and even the ascites was blamed on a drug reaction. There were lots of early signs but this is so rare that it was not on the radar screen of radiologists and specialists, who eventually told me that it was pancreatic cancer after a long-overdue endoscopy. I think that I lost at least eight or nine months and endured a hysterectomy for a prolapse that I believe was due to the ascites. I am a nonsmoker, drank beer or wine only occasionally, ate a very healthy diet, and had no pain or other GI symptoms except for gas (which I blamed on a high fiber diet) and used to joke that I had "a cast iron" stomach.

    I started with Folfox last September but had to discontinue infusions in January after adverse reactions, but they upped the zeloda and I took that for about three more months till I suddenly lost all feeling below my knees while I was driving home from the store. My fingers had bothered me a lot for a while but a complete loss of sensation was something not communicated to me and I was frightened out of my mind that I would hurt someone or cause an accident because I could not feel the pedals. Fortunately I was only a few blocks from home and somehow made it. I was taken off the zeloda a week earlier than planned and was off chemo for a few months and started to be able to use my fingers and--much later--drive again.

    After a CAT scan last month I was put on Folfiri and initially found it much easier than the Folfox, with only a few days of flu-like fatigue. I had walked to the infusion center only about six blocks from where I live and could have walked home but a visiting nurse gave me a lift because I had to bring home a big box and stay out of the sun. I did okay I thought, but a couple of days ago I started to run to the bathroom more frequently and now the severe neuropathy (hand and foot syndrome) is returning and it hurts a lot to use my fingers and my feet are getting numb so I am afraid to drive. My doctor told me that the neuropathy is due to the oxiliplatin still remaining in my body even after six month off, triggered by the Fu in the fanny pack. No hair loss yet, but my doctor warned me and I got a wig. I had to get a mediport snd wear a fanny pack 24 hours a day for two days and receive home care to remove it, but the visiting nurses said that I might not loose all my hair, only experience thinning. Monday I go back for a second infusion and will update if I can till type.

    The kicker is that everyone tells me that I look just great and when I had my yearly physical last month my physician informed me brightly everything was in great shape except for the obvious condition. I don't blame her for the diagnosis lapse--I had very vague symptoms for a long time--but when they began to be more obvious she was unavailable because of problems within her own family and I had to see physician assistants who misdiagnosed me with diverticulitis (WRONG) and high cholesterol (never before a problem and I was even complimented on my previously low counts and obviously good diet) and even the specialists who I was later referred to misdiagnosed me first with gall bladder problems and then with pancreatic cancer.

    I would like to compare notes with others, especially with regard to diet and alternative/complementary treatments.
  • carl17
    carl17 Member Posts: 15
    #36
    goingtobeatthis said:

    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

    I am 63 year old male living in Toronto Canada.

    I was diagnosed in May 2012. I had the first warning sign when I got deep vein thrombosis (DVT) in January - this turned into a pulmonary embollisim. My low hemaglobin sent them looking for Cancer and I had an upper GI and Colonoscopy both of which were clear. They considered an abdominal scan but didn't do it ("In my 40 years I have only had one that was positive" said the doctor. Actually he has had at least two one he got and me he missed. In May I was back in the hospital after a second set of blood clots and a second pullomanary embollisim. My body was telling them something.

    I had a resection of the small bowel (is that what everyone is calling a whoopie?) They removed a 6.5 cm tumour which was maglnant. It is termed an aggressive variant of macropapilliary adenocarcenoma in the small bowel. (4th section of the dudodema). The margins were clear in the resection but the circumference of the tumour ill defined. I am in stage 3a - Spread to one lymph node.

    I had the surgery June 1 and after some post surgery complications (swelling where you don't want to swell . During surgery only 3 lymph nodes were taken out. The surgeon said the others were too close to viens that feed the small intestine with blood and an error could be fatal.

    I am surprised that in the US it seems that removal of lymph nodes seemed more prevalent. Certianly I would have preferred that. I am going for a second opinion surgical consult to see if more can be removed as what I read about the efficay of Folfox is not encouraging. One study I saw said it was 'sucessful' in 13% of cases - success being defined as prolonging expectancy by 12-14 months.

    I also find it disconcertuing that there seems to be no way of knowing whether it is actualling killing the microscopic cells.

    I started my Folfox chem on Thursday and wore the chemo bag fannie pack for two days which is due to be disconnected momentarily.
    I have had no side effects yet but have been told 5-7 days from the initial chemo is the time they may materialize.

    The second difference I see from a lot of the posts is that radiation is used in the US but not here - too much danger of hitting and damaging other organs.

    Please stay in touch.

    carl
  • carl17
    carl17 Member Posts: 15
    #37
    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

    how is your dad doing now?


    Hi: I have recently been diagnosed with small bowel cancer - see the post from me below (the lion for the full story).

    I am wondering about the whipple procedure - was there spread to the pancreas or was this a preventitive step.

    How is your dad now? There seem to be so few success stories with this tyoe of cancer.

    take care

    carl

    the lion
  • carl17
    carl17 Member Posts: 15
    #38
    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

    how is your dad doing now?


    Hi: I have recently been diagnosed with small bowel cancer - see the post from me below (the lion for the full story).

    I am wondering about the whipple procedure - was there spread to the pancreas or was this a preventitive step.

    How is your dad now? There seem to be so few success stories with this tyoe of cancer.

    take care

    carl

    the lion
  • GuidoMamma
    GuidoMamma Member Posts: 1
    #39
    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

    Please Help!
    Last month My Dad, 49, was diagnosed with stage four adenocarcinoma duodenum cancer. He was Medflighted to Stanford vomiting blood, a tumor had breached the wall of the artery that feeds the lower intention causing the bleeding. He received eight pints of blood in one evening. The doctors believe that they will never be able to operate because of the position of the tumor; surgery is to dangerous. At this point he has gone through one round of chemotherapy. I have read all the posts on this page and it appears that lack of appetite is part of this disease; my Father has lost 65 pounds in a month. Does anyone have any ideas or tips on how to get him to eat? What might be easier on his stomach? Any way to stop him loosing weight? My family is afraid that if he looses too much more weight he might not be eligible for chemo anymore. Any suggestions would be a great help. Between his last doctors appointment 10 days ago to now he has lost 15 pounds!
  • shivmsit
    shivmsit Member Posts: 1
    #40
    nsd60 said:

    surviving duodenal cancer with liver mets
    I have not posted to this board in awhile. There is a duodenal cancer group on facebook and yahoo.com. This is in response to the person who posted on June 6th 2012. I am so sorry to hear about your diagnosis. My husbands cancer spread to his liver after 8 rounds of oxilplatin and xeloda. He had a whipple on April 2011. My suggestion to you is to get on a different chemo. Maybe Fofori (irinotican and 5fu) along with avastin. See if that shrinks the tumors. We have had chemoembolization and sir spheres. The sir sphere treatment was on April 5th and as of scans May 11th it was showing that his tumors are starting to die (he has 6 in his rt lobe). My husband Larry is doing ok-he has had a lot of infections and we have been in the hospital 3 times in months due to different infections. He had his porte removed last week and it will be put back in once the infection clears. I also suggest having a biopsy done of your liver tumor to determine what chemo drugs would work. If you have the KRAS gene then erbutix might work for you-otherwise avastin. Go to Beatlivertumors.org to see survival stories. People have survived this. I hope we will be one of them-all of us on this board! nanci

    duodunum adeno carcinoma
    Hello, my brother of age 24 years was dignosed with moderately differentiated adeno carcinoma of deudunum in june 2010. He underwent a surgery than 25 cycles of chemo therapy. Now 2 days back he was admited in hospital again i serious condition qnd his deodunum has blocked
    and also his cancer mets to lungs. I have read about by pass surgery or stents but i am not sure doctor in India would do this kind of surgery or not. This ssurgery may save his life or give him life for another 2-3 years. Inspite of chemo his cancer keep on spreading. I wish we find a surgeon who can do needful operation. I wish you all the very best to fight with deudunum cancer.
  • Alijojolambo
    Alijojolambo Member Posts: 1
    #41
    GuidoMamma said:

    Please Help!
    Last month My Dad, 49, was diagnosed with stage four adenocarcinoma duodenum cancer. He was Medflighted to Stanford vomiting blood, a tumor had breached the wall of the artery that feeds the lower intention causing the bleeding. He received eight pints of blood in one evening. The doctors believe that they will never be able to operate because of the position of the tumor; surgery is to dangerous. At this point he has gone through one round of chemotherapy. I have read all the posts on this page and it appears that lack of appetite is part of this disease; my Father has lost 65 pounds in a month. Does anyone have any ideas or tips on how to get him to eat? What might be easier on his stomach? Any way to stop him loosing weight? My family is afraid that if he looses too much more weight he might not be eligible for chemo anymore. Any suggestions would be a great help. Between his last doctors appointment 10 days ago to now he has lost 15 pounds!

    Muscle milk
    So sorry to hear about your dad. With all of the transfusions, your dad's case sounds somewhat like my FIL who was also at Stanford...perhaps we passed each other in the hall!

    What helped him keep weight on was Muscle Milk. He started on Ensure, but the MM is actually more caloric. Look for any weight gainers that he can tolerate...try your local vitamin/nutrition shop.

    Best of luck with your dad. We lost our dear Grampa John last month, but he was significantly older than your dad (79) and had other complications.

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