Surviving Duodenal Cancer

124

Comments

  • cat57
    cat57 Member Posts: 10
    edited July 2017 #62
    fsr said:

    Hello cat57, I'm 68 and I've been where your at and have a little bit of an idea of what your going through. By now you should have a better idea of what's going on...you may (if required) have already had surgery. I went in to the hospital for a blockage on Feb 12, 2016 and by Feb 19 they had performed a partial whipple on me. I look back and it was so fast it was kind of a blurr. Started chemo in April and ended it in Sep 2016. A major problem for me is that the cancer had already broken through the wall of the intestine and was laying on my aorta. The surgeon did his best to get me cleaned up when he was rebuilding me but the stuff has come back as a small mass in between (of all places) the two major arteries so, after a half year off, I'm going to start over on the chemo. I have a strong reliance in what the word of God says and I believe that has helped me to accept this as an adventure and not to be overly stressed out. So far (just a heads up) the worst discomfort for me has been the removal of the drain tubes after the surgery...lol, but that only lasted for less than a minute. The doctor swore to me that it would not hurt him as he walked out the door and his assistant removed the drain tubes...lol. I know this is a stressful time for you and I am hoping you can relax and know that we live in a time when the doctors, nurses, and procedures are the best in the world. Stay strong, always drink plenty of water and I hope 10 years from now we will be able to converse with each other about these experiences. Regards

     

    Thank you

    Thanks for sharing your experience and for your kind words,fsr.  I had been told I would know the results, at least some, immediately after the endoscopy/biopsy on Friday, only to have them tell me I need to wait till this Wednesday to hear anything. The wait is awful. I am also a chronic pain patient, so all of this is wreaking having on my pain levels. I will keep you in my prayers and know things will turn out postively for us both!!  (((gentle hugs)))

  • Lolohihi
    Lolohihi Member Posts: 1
    #63
    Help/scared

    Hello my father got diagnosed about 3 weeks ago went through Whipple surgery but could not do anything 5 cm tumor stage 4 he has been recovering from surgery and tomorrow we have the first oncologist appointment

  • Sedabaf
    Sedabaf Member Posts: 7 Member
    #64
    cat57 said:

    Thank you

    Thanks for sharing your experience and for your kind words,fsr.  I had been told I would know the results, at least some, immediately after the endoscopy/biopsy on Friday, only to have them tell me I need to wait till this Wednesday to hear anything. The wait is awful. I am also a chronic pain patient, so all of this is wreaking having on my pain levels. I will keep you in my prayers and know things will turn out postively for us both!!  (((gentle hugs)))

    Duodenal cancer

    Hi dear, how are you?  My father was diagnosed 10 days ago. His stage is 3, he had a whipple 5 days ago. I have some hope that if it was too bad they wouldn't ooerate him. His duodenum, gallbladder, part of pancreas part of stomach were removed. He will have chemo. I cant think about anything else. I believe in God. He will save my father who is so young. 56 yars old

  • Annie 1234
    Annie 1234 Member Posts: 1
    edited November 2017 #65
    I'm really worried.....

    Hi um...I'm a south Korean student. I just heard from my grandmother that she got duodenal cancer. I know nothing about that kind of cancer. So I searched about it but according to websites, there are hardly informations of duodenal cancer... I'm really worried about my grandma and I need your help. My aunt said it is first stage of duodenal cancer so she can get better soon but I'm still anxious..Grandma was such a healthy person and she did not show any symtoms. Will she get better soon?? I will look forward to your answers. Thank you.

  • DivyaHanda
    DivyaHanda Member Posts: 2
    #66
    Warrior820 said:

    Duodenal cancer

    I just wanted to leave a little hope here... I am a survivor of stage 4 duodenal cancer... never had surgery either tumor gone. I am in remission have not had any medical intervention since august 2016. Anybody want to reach out to me. I will be more than happy to talk to them

    Dad diagnosed with Duodenal cancer that's inoperable.

    Hi Warrior820, seeing your post gives me hope for my Dad. He was recently diagnosed with Duodenal Cancer - inoperable due to lymph node spread. We are awaiting results of the PET Scan. Please share your story and treatment plan for surviving stage 5 duodenal cancer with no surgery.

    Thanks

    Divya


     


  • Badger325
    Badger325 Member Posts: 1
    #67
    Warrior820 said:

    Duodenal cancer

    I just wanted to leave a little hope here... I am a survivor of stage 4 duodenal cancer... never had surgery either tumor gone. I am in remission have not had any medical intervention since august 2016. Anybody want to reach out to me. I will be more than happy to talk to them

    40 year old Stage 4 Duodenal cancer

    I am a 40 year old female that was recently diagnosed with duodenal cancer in December 2017.  Had a whipple in January 2018, negative margins but 7/41 lymph nodes with cancer.  About a month out, my CT scan just showed some disease in my liver.  Meeting with oncologist next week, but would like to start chemo yesterday, after seeing it spread so fast to my liver.  Anyone else have a similar experience?  I have two small kids (5 and 8) and I refuse to let cancer beat me.  I still need to be tested, but they think I have a FAP gene mutation that led to my duodenal cancer.  Hugs to everyone and thanks for sharing stories!

  • Warrior820
    Warrior820 Member Posts: 6
    #68
    DaughterOfMother said:

    Can you talk about what treatment was successful for you? My mom was diagnosed with stage 4 duodenal cancer in July 2016 at age 56. At the time she was diagnosed, the tumor was already too large for her to be a candidate for whipple surgery. She has done FULFOX, FULFURI, and TAXOL without any positive effect. The main tumor continues to grow and the cancer continues to spread to other organs. She is now enrolled in a clinical trial using immunotherapy, and now we wait... Any helpful information you can provide would be much appreciated.

    duodenal cancer

    Hi there ... as you can see I am not on here. I’m still here almost 3 yrs later stage 4 too. I’m on immunotherapy and doing great. Gained all my weight back. It’s been a long road. There is hope out there

  • Warrior820
    Warrior820 Member Posts: 6
    #69
    DivyaHanda said:

    Dad diagnosed with Duodenal cancer that's inoperable.

    Hi Warrior820, seeing your post gives me hope for my Dad. He was recently diagnosed with Duodenal Cancer - inoperable due to lymph node spread. We are awaiting results of the PET Scan. Please share your story and treatment plan for surviving stage 5 duodenal cancer with no surgery.

    Thanks

    Divya


     


    Hey there still here I never

    Hey there still here I never got my whipped but my primary tumor gone! I still have small Mets to my lung and mesenteric artery and both ovaries. But I BEAT the odds. 

  • Warrior820
    Warrior820 Member Posts: 6
    #70
    DivyaHanda said:

    Dad diagnosed with Duodenal cancer that's inoperable.

    Hi Warrior820, seeing your post gives me hope for my Dad. He was recently diagnosed with Duodenal Cancer - inoperable due to lymph node spread. We are awaiting results of the PET Scan. Please share your story and treatment plan for surviving stage 5 duodenal cancer with no surgery.

    Thanks

    Divya


     


    Hi there. I can answer any

    Hi there. I can answer any questions. Private message me on here. I will try to reach out to you. 

  • CindyStar55
    CindyStar55 Member Posts: 3
    #71
    Duodenal Cancer Options

    My husband is currently stage 4 Duodenal Cancer. He had the Whipple Procedure and FOLFOX two years ago. His cancer came back and is now doing FOLFIRI. The doctors are now saying he has about a year to live. Does any one have any advice or know of any doctors who specialize in Duodenal Cancer? 

  • CindyStar55
    CindyStar55 Member Posts: 3
    #72
    DaughterOfMother said:

    Can you talk about what treatment was successful for you? My mom was diagnosed with stage 4 duodenal cancer in July 2016 at age 56. At the time she was diagnosed, the tumor was already too large for her to be a candidate for whipple surgery. She has done FULFOX, FULFURI, and TAXOL without any positive effect. The main tumor continues to grow and the cancer continues to spread to other organs. She is now enrolled in a clinical trial using immunotherapy, and now we wait... Any helpful information you can provide would be much appreciated.

    I am in the search for a

    I am in the search for a clinical trial for my husband. Do you know what hospital system she went to for the immunotherapy?

  • CindyStar55
    CindyStar55 Member Posts: 3
    #73
    Warrior820 said:

    Duodenal cancer

    I just wanted to leave a little hope here... I am a survivor of stage 4 duodenal cancer... never had surgery either tumor gone. I am in remission have not had any medical intervention since august 2016. Anybody want to reach out to me. I will be more than happy to talk to them

    Duodenal Cancer Options

    My husband is currently stage 4 Duodenal Cancer. He had the Whipple Procedure and FOLFOX two years ago. His cancer came back and is now doing FOLFIRI. The doctors are now saying he has about a year to live. Do you have any advice or know of any doctors who specialize in Duodenal Cancer? Or can you let me know what hospital system you went to for the immunotherapy?

  • Cam4
    Cam4 Member Posts: 1
    #74
    Warrior820 said:

    Duodenal cancer

    I just wanted to leave a little hope here... I am a survivor of stage 4 duodenal cancer... never had surgery either tumor gone. I am in remission have not had any medical intervention since august 2016. Anybody want to reach out to me. I will be more than happy to talk to them

    Sarcomatoid carcinoma of duodenum

    Nice to hear that your doing well. I was diagnosed with the above in January 2018. Been on  folfox since early February. Tumors are shrinking and I feel pretty good, how long were you doing chemo before you switched to Immunotherapy? My biggest problem has been weight loss and a few quirky side effects. I am a 57 year old man, who thought he was having a bad ulcer. I probably got this stage 4 mess around the summer of 2017. No surgery or radiation available just chemo. Looking for advice Warrior820 or from anybody going through something similar. Thanks

  • Warrior820
    Warrior820 Member Posts: 6
    edited June 2018 #75
    DaughterOfMother said:

    Can you talk about what treatment was successful for you? My mom was diagnosed with stage 4 duodenal cancer in July 2016 at age 56. At the time she was diagnosed, the tumor was already too large for her to be a candidate for whipple surgery. She has done FULFOX, FULFURI, and TAXOL without any positive effect. The main tumor continues to grow and the cancer continues to spread to other organs. She is now enrolled in a clinical trial using immunotherapy, and now we wait... Any helpful information you can provide would be much appreciated.

    How is your mom? I’m just

    How is your mom? I’m just seeing this as I’m not on here . I’m good I was booted out of. My immunotherapy in may for a small progression but my amazing insurance company saw how well KEYTRUDA was working they are covering complete cost of future treatments for a year and will reappove again next year if I’m stable. I was diagnosed stage 4 in July 2015... 3 years ago! Almost all my metastasis is gone but on mesenteric  and still inoperable.

  • Warrior820
    Warrior820 Member Posts: 6
    edited June 2018 #76
    shannond said:

    Would love more info! I'm

    Would love more info! I'm very happy to hear you news. I wish you continued good health! My mom is not eligible for the whipple because of the area of her tumor. What type of interventions have you done? Thank you in advance. Your story does offer hope. 

    Sure I was diagnosed in July

    Sure I was diagnosed in July 2015. Stated folfox 5 I had 13 treatments. ( 8/2015-5/2016) then I had radiation with oral chemo( summer 2016. Fall 2016 Was completely on my own high thc oil ( medical marijuana pt) and I have been on thc oil since day one. . Thc ( FECO) has and continues to keep cancer for the most part stable. Then in April 2017 i had a mets to ovary. ( ovary removed ) then went on oral chemo. Summer 2017 just my natural supplement and thc oil ... oct 2017 the other ovary got cancer but was told inoperable now.. I was put on clinical trial of keytruda in November and still on keytruda doing well .. all my lung mets down, no cancer detected in pelvis. And slight growth to lymph node around artery. My tumor markers ca19-9 is at 36 now! That’s normal levels!

  • JohnnyQ
    JohnnyQ Member Posts: 1
    #77
    Duodenal cancer diagnosis

    I was diagnosed with a nonresectable (inoperable due to proximity to major artery) tumor which involves the ampulla, duodenum and pancreas head.  I think it was actually food poisoning that brought me to the ER where they discovered the tumor on X-ray.  I have had no recurrence of pain, or any of the usual symptoms with digestion.  Doc says they can't really tell where it arose from, so they are staging it at IV, even though it is contained in a small area.  I have completed 4 rounds of mFOLFIRINOX with only minor side effects of fatigue and neuropathy in the fingers and mouth.  I will have a CT scan next week to check on the tumor.

    I go to a National Cancer Center of Excellence at Emory University Hospital in Atlanta.  I would highly recommend this facility.   

  • kswatson
    kswatson Member Posts: 2
    edited February 2020 #78
    JohnnyQ said:

    Duodenal cancer diagnosis

    I was diagnosed with a nonresectable (inoperable due to proximity to major artery) tumor which involves the ampulla, duodenum and pancreas head.  I think it was actually food poisoning that brought me to the ER where they discovered the tumor on X-ray.  I have had no recurrence of pain, or any of the usual symptoms with digestion.  Doc says they can't really tell where it arose from, so they are staging it at IV, even though it is contained in a small area.  I have completed 4 rounds of mFOLFIRINOX with only minor side effects of fatigue and neuropathy in the fingers and mouth.  I will have a CT scan next week to check on the tumor.

    I go to a National Cancer Center of Excellence at Emory University Hospital in Atlanta.  I would highly recommend this facility.   

    Checking In

    How are you doing currently? I was diagnised stage 4 duodenum with metastisis in liver and Superclavicular lymph nodes. Inoperable and no radiation. Doing Oxyplatin infusion every 3 weeks with Xeloda 2 weeks on 1 week off. How are you feeling now

  • MemeTriMna
    MemeTriMna Member Posts: 1
    edited June 2020 #79
    Duodenal Adenocarcinoma

    My husband was diagnosed with stage 2B duodenal cancer in January after being misdiagnosed with gastroparesis.  They attempted a Whipple in January, but were unable to pull the tumor away from the blood vessels.  They ended up doing a bypass so he could eat and started chemo.  He is completing his 6th round of chemo this weekend and then they will attempt surgery again.  It has been a difficult road as he had an infection after the previous surgery along with a fistula that we thought would require surgery, but healed on his own.  Surgery again terrifies me, but I know it is necessary.  They are planning 6 more rounds of chemo after surgery.  Y'all, I hate chemo, and I am not the one getting it.  He has a bag over the weekend and he is so grumpy.  I know he feels horrible and probably hates me for constantly telling him to be positive.  He is 50 and we have an 11 year old daughter.  As far as we know, it has not spread which is the one thing that I feel positive about.  I feel horrible for not being 100 percent positive all the time, but I am absolutely drained mentally.  I feel guilty because I don't have it, so I have no idea what he is going through (which he likes to remind me of).  This man is my whole life and after watching my mother pass from a  cancer 7 years ago that should have been treatable, him having a rare cancer that requires such a difficult surgery just has me on edge. Has anyone else had a successful Whipple after a failed first attempt?

  • KGunter76
    KGunter76 Member Posts: 2
    edited August 2020 #80
    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 just wanted to

    Carrie, I just wanted to follow up and see how you are doing. My husband was diagnosed 3 months ago with duodenal cancer stage 3. Your story gave us so much hope. i would love to hear more about your story. 
    thanks so much!

    Kim Gunter 

    (content removed by CSN moderator)

  • KGunter76
    KGunter76 Member Posts: 2
    edited August 2020 #81
    nsd60 said:

    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?

    Can you share how your

    Can you share how your husband is doing? This cancer is so rare that it would be wonderful to hear a personal story. 
    thanks!

    kim

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