Duedonal cancer, stage 4

Tonimacaroni55
Tonimacaroni55 Member Posts: 1
in Rare and Other Cancers #1

Stage four duedonal cancer :

I have stage 4 duedonal cancer,  I was diagnosed in may of 2016. I  am now 61 years old.  A woman.  It's  inoperable,  it metastasized, into my  stomach cavity,  not my  stomach  but between. 

I  have had a  jujetsom  operation  to bypass my  duedomen  and have my stomach emptying into a intestine.  I now have a  fast dumping  stomach.  So the chemo  treatment and my stomach  creates a perfect storm.  I  have to  eat no greasy,  spicey,  few cooked veggies and fruit.  It's a boring diet. And it doesn't stop the horrible diarrhea and intestinal cramping. I  get very few good days,  I get chemo  every two weeks  indefinitely.  I am considered terminal. 

Such a shock,  I have always seemed like a healthy person,  ate healthy,  never smoked or drank  heavily.  I  never did  recreational drugs.  So why?  I  have no known genetic  markers.  It's  just  like a sucker punch to the  gut!  Incredible!  It's been 8  1/2 months  since my  diagnosis.  I  was given  8 to 12 months.  My tumor is not really growing,  but surviving the side effects of chemo  is  horrendous.  I  had a full blown  stroke  the first treatment. Just seems  insane,  unimaginable! 

I thought started out throwing up for no reason,  first I was diagnosed with  gastroparesis,  but three months of constant throwing up,  until I was so ill,  going into the emergency room,  finally I got  a dye CT scan and they found the tumor,  sent me in a ambulance to a big specialized  hospital.  They told me that they couldn't  operate  and I needed to go home and make arrangements for dying. 

I am doing chemo, and my oncologist  is  keeping it from  really growing,  but I don't know how long.  I  may get another year,  providing this body  doesn't develop any complications.  I  seem to have odd things happen,  like the stroke  and allergic reactions to medication and the dye in the CT scan,  went into anaphylaxis,  so not sure what might happen before it's all over. 

The side effects of the chemo is really  bad so fighting for good days always. But,  I  believe life is a gift from  God,  and I am going to try to do good and enjoy the most important things of life,  like family  and hope! Also,  I  try to see the good or funny  things in life and share it.  That's not easy to do,  I'll,  but not impossible. 

Comments

  • sweetdreamssweetie
    sweetdreamssweetie Member Posts: 1
    edited January 2017 #2
    My dad also has stage IV duodenal cancer

    My dad is 55 years old and was the picture of good health. Ran marathons, ate healthy, never smoke and hardly drank. I understand your frustration there. He was diagnosed last March after they found a tumor sitting between his duodenum, pancreas, and liver. It is also inoperable. Originally, doctors thought they may be able to remove it but it is connected to the blood supply of the major organs around it. He has been on 3 different types of chemo - all worked in the beginning and showed shrinkage in the tumor and then eventually quit. 

    Finding information or other people who have had this cancer has been so difficult! His biggest issue is being able to eat. Everytime he eats, his pancreas expands and presses against the tumor causing so much pain. He has lost over 80 pounds - we now weigh the same and I'm 5'2 and he is 6'1. It's incredibly difficult getting his pain under control and we have tried so many meds and varying dosages. The doctor has said the only option we have left is trying to send a biopsy to a lab called Foundation One (haven't been able to find much about them) and having them match the tumor cells with a certain treatment. However, this is considered experimental and is not covered by insurance and, may not work. So we don't think we can do that. We were told in March that there was only a 10% chance the tumor and the cancer would ever be gone. 

    He is set for another chemo treatment on Tuesday. At this point, the doctor just wants to slow the growth of the tumor. However, I think we are going to end chemo treatment all together and talk to the doc about what exactly that will look like. Ideally, without chemo, he is hoping to be able to eat more and gain some of his muscle mass and strength back. 

    He has little interest in food and is overwhelmingly weak. I'm not sure if he has much longer. 

    Please do things you enjoy as often as possible!!!! We try to have a good laugh out of him at least once a day. I'm sorry I'm not much help in giving advice to the situation. But maybe you can find comfort in knowing there are others that are just as lost in this rare form of cancer as you are. 

     

    Erin 

  • abrub
    abrub Member Posts: 2,174 Member
    #3
    Have you been to a specialty center?

    My appendix cancer metastasized to the belly area - stomach cavity.  I had debulking and intraperitoneal chemo directly into the abdominal cavity.  I'm 9 years out.

    You need to get to a specialty cancer center like Sloan Kettering.

  • Tracy0221
    Tracy0221 Member Posts: 1
    #4
    sweetdreamssweetie said:

    My dad also has stage IV duodenal cancer

    My dad is 55 years old and was the picture of good health. Ran marathons, ate healthy, never smoke and hardly drank. I understand your frustration there. He was diagnosed last March after they found a tumor sitting between his duodenum, pancreas, and liver. It is also inoperable. Originally, doctors thought they may be able to remove it but it is connected to the blood supply of the major organs around it. He has been on 3 different types of chemo - all worked in the beginning and showed shrinkage in the tumor and then eventually quit. 

    Finding information or other people who have had this cancer has been so difficult! His biggest issue is being able to eat. Everytime he eats, his pancreas expands and presses against the tumor causing so much pain. He has lost over 80 pounds - we now weigh the same and I'm 5'2 and he is 6'1. It's incredibly difficult getting his pain under control and we have tried so many meds and varying dosages. The doctor has said the only option we have left is trying to send a biopsy to a lab called Foundation One (haven't been able to find much about them) and having them match the tumor cells with a certain treatment. However, this is considered experimental and is not covered by insurance and, may not work. So we don't think we can do that. We were told in March that there was only a 10% chance the tumor and the cancer would ever be gone. 

    He is set for another chemo treatment on Tuesday. At this point, the doctor just wants to slow the growth of the tumor. However, I think we are going to end chemo treatment all together and talk to the doc about what exactly that will look like. Ideally, without chemo, he is hoping to be able to eat more and gain some of his muscle mass and strength back. 

    He has little interest in food and is overwhelmingly weak. I'm not sure if he has much longer. 

    Please do things you enjoy as often as possible!!!! We try to have a good laugh out of him at least once a day. I'm sorry I'm not much help in giving advice to the situation. But maybe you can find comfort in knowing there are others that are just as lost in this rare form of cancer as you are. 

     

    Erin 

    Eating

    My dad is newly diagnosed duodenal adenocarcinoma with liver mets. When they did the laparotomy was when the liver mets were found so the surgeon did a bypass around the third portion of duodenum where his tumor was simply to allow him to eat after 5-6 months where his nutrition and hydration was almost non-existent. Idk if it's beyond that for your dad? I would inquire about that as a possibility. If not an option- how about a feeding tube? It's grim but at least it would help get some nutrition into him. Best wishes to your dad and you too!!

  • nmerbitz
    nmerbitz Member Posts: 1
    #5
    Celiac disease is a huge risk factor for duodenal CA

    My husband, 71, was diagnosed Stage IV Duodenal Adenocarinoma at the end of March this year, stenosis of the second portion of the duodenum, plus liver mets and enlarged lymph nodes. We are fortunate to live in Cleveland and going to the Cleveland Clinic, Dr. MacNamara is wonderful.  Husband is finishing up FULFOX chemo (infusions every other week with the fanny pack for two days), and then a maintenance dose is planned long term, and/or possibly Ketruda (sp?).  The chemo has stopped the tumor growth but not really any noticeable shrinkage.  He finally had a stent put in about 3 weeks ago to open things up so he could eat, and then he did start gaining a bit of his weight back (had lost 20+ pounds). Symptoms of pain and indigestion started in January, and were initially diagnosed as GERD. Anyway, he was diagnosed 11 years ago with Celiac disease, and has followed a very strict gluten free diet ever since. However, due to years of inflammation prior to that, he was unknowingly placed at many many times the risk for duodenal cancer. We read about this AFTER he was diagnosed with this rare cancer.  Get the word out: people with Celiac disease should be screened for duodenal cancer, especially if digestive problems persist or start up again even while on a struct GF diet.  If caught sooner, duodenal cancer can be cured. If caught late, you can only buy some time. We are hopeful for more time, and so far the quality of life is not bad - he gets fatigue and general bad feeling during chemo for several days, and then feels better gradually again.  Gets numbness and tingling in fingertips and lips, sensitive to cold and pressure.  Would be happy to hear from others, with info and/or questions, and support.  Thank you

  • cat57
    cat57 Member Posts: 10
    #6
    nmerbitz said:

    Celiac disease is a huge risk factor for duodenal CA

    My husband, 71, was diagnosed Stage IV Duodenal Adenocarinoma at the end of March this year, stenosis of the second portion of the duodenum, plus liver mets and enlarged lymph nodes. We are fortunate to live in Cleveland and going to the Cleveland Clinic, Dr. MacNamara is wonderful.  Husband is finishing up FULFOX chemo (infusions every other week with the fanny pack for two days), and then a maintenance dose is planned long term, and/or possibly Ketruda (sp?).  The chemo has stopped the tumor growth but not really any noticeable shrinkage.  He finally had a stent put in about 3 weeks ago to open things up so he could eat, and then he did start gaining a bit of his weight back (had lost 20+ pounds). Symptoms of pain and indigestion started in January, and were initially diagnosed as GERD. Anyway, he was diagnosed 11 years ago with Celiac disease, and has followed a very strict gluten free diet ever since. However, due to years of inflammation prior to that, he was unknowingly placed at many many times the risk for duodenal cancer. We read about this AFTER he was diagnosed with this rare cancer.  Get the word out: people with Celiac disease should be screened for duodenal cancer, especially if digestive problems persist or start up again even while on a struct GF diet.  If caught sooner, duodenal cancer can be cured. If caught late, you can only buy some time. We are hopeful for more time, and so far the quality of life is not bad - he gets fatigue and general bad feeling during chemo for several days, and then feels better gradually again.  Gets numbness and tingling in fingertips and lips, sensitive to cold and pressure.  Would be happy to hear from others, with info and/or questions, and support.  Thank you

    (((((gentle hugs)))))

    I am not even sure what to say. I am a HUGE ball of confusion!  I was only diagnosed with Duodenal cancer, supposedly late stage, on Friday...even tho my endoscopy is not till this week. My tumor was apparently first discovered in 2004 (!!!!!) , which was news to me, and no one did a thing about it. I was diagnosed with GERD YEARS ago.....now am wondering if that is truly what I have there as well. the Oncology Specialist I saw on Friday sounded very positive, like, despite being a long process, it was no big deal, and I would be cancer free for sure. The OVERpositivity made me nervous.You said your husband has pain? I have been a chronic pain patient for over 15 years, so I am nervous about how that is going to all play in this big picture!! I pray yo get as much time as possible with your husband.......and that it is quality time as well. I apologize if my post sounds awful.....I should perhaps stop researching and reading.....as I thnk I am getting mre scared as I read more!!   God Bless

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