high grade neuroendocrine carcinoma of the stomach

n_d
n_d Member Posts: 5
in Rare and Other Cancers #1

My 33 old husband has been diagnosed with NEC in stomach with mets to liver. As per the biopsy, ki67 index of stomach is less than 10% while the index for the liver is up to 40% (high grade). He cannot have a surgery because it's too invasive.

 

The oncologist said its not curable and the goal of the treatment is to control the disease and prolong life. We took a second opinion from Dana Farber and they agree with our oncologist's treatment plan. He is currently on chemotherapy (CAPTEM) which he is tolerating well. 

 

He was hospitalized for jaundice and the scans revealed tumors. Stent was placed (twice since the first ERCP was a failure) and the acute pancreatitis was so severe that he had to be in hospital for 3 weeks. He lost 20 lbs ( is 127 lbs now) and is slowly getting back to his normal routine. 

 

He was in his best of health before the diagnosis. Do we have anyone cured of this disease? Why is ki67 different in his stomach and liver? Has anyone had it in stomach and just chemo to take care of it? 

 

Any one to answer my questions? Or to make me feel better? It's so hard to get this diagnosis and harder with a newborn to take care of. 

 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    #2
    n_d, I am so sorry to hear

    n_d, I am so sorry to hear about your husband.  

    I see you are asking about stomach cancer, and wondered if you saw that there was a group for that here on the chat boards?  

    I can't imagine what you are going through.  A husband fighting this beast?  A newborn?  If you should see this message I hope you willl consider visiting the stomach cancer page and find someone for you to talk to.  No doubt it is all overwhelming.

  • northa914
    northa914 Member Posts: 100
    #3
    Pancreatic neuroendocrine carcinoma

    Although mine didn't originate in the same organ, it did originate in the gastrotintestinal system. I was originally misdiagnosed in June 2010 with stage 4 bile duct cancer, only to discover 2 1/2 years later that I actually had neuroendocrine carcinoma (January 2013).  After 5 months of unsuccessful treatment with Afinitor, I was given the CapTem starting March of 2014, and so far so good! I have the well-differentiated, moderately growing type, and it's in my liver, lymph nodes, and bones as well (bone islands, so many that my PET scan lights up like a Christmas tree). I had four chemoembolizations (chemo  directly placed in the liver near whichever was tumor was being treated at the time) when we thought I had bile duct cancer, which kept me around long enough to finally chase the right beast since none of the chemotherapies were working (gee, maybe because we were fighting the wrong enemy?)  I'll always be stage 4 and will never be cured, but my specialist explained that we would keep it under control as long as possible, and that I could potentially die with the disease and not from it.  Of all of the therapies I've been on, CapTem is the easiest by far.  

    Not sure about your ki67 question, that does sound strange.  Hopefully the oncologist(s) can give you an answer to that, or was their answer more confusing?

    I hope this helps :)

     

    Andrea

     

  • n_d
    n_d Member Posts: 5
    #4
    Ki67

    Thankyou for your replies. 

    Ki67 measures the rate of growth of the cancer cells. When you say your cancer is slow growing it means tou have low ki67. My husbands is fast growing poorly differentiated. I did ask the oncologist and he said maybe it's 40 in his stomach too and the samples taken for biopsy could show 10.

     

  • n_d
    n_d Member Posts: 5
    #5
    Scared

    It's a roller coaster of emotions. we've know each other since we were teens. Only guy I've ever dated. Married for 8 years. 2 kids. Life was just perfect. Then boom, felt like we were shot in the head. 

     

    I still can't understand why this is happening. What plans the almighty has for us. I trust him completely, he will show us the way. I just have to be strong for my kids.

     

    My husband is my hero. He is so positive and says it is unfortunate he has some unwanted guests in his body but all that he is responsible for is to take the treatment and the rest will fall in its place. I wish I have his strength and attitude. 

     

    I am scared and not in my senses. I have such a strong supportive family but for some reason I feel so lonely. 
  • northa914
    northa914 Member Posts: 100
    #6
    n_d said:

    Scared

    It's a roller coaster of emotions. we've know each other since we were teens. Only guy I've ever dated. Married for 8 years. 2 kids. Life was just perfect. Then boom, felt like we were shot in the head. 

     

    I still can't understand why this is happening. What plans the almighty has for us. I trust him completely, he will show us the way. I just have to be strong for my kids.

     

    My husband is my hero. He is so positive and says it is unfortunate he has some unwanted guests in his body but all that he is responsible for is to take the treatment and the rest will fall in its place. I wish I have his strength and attitude. 

     

    I am scared and not in my senses. I have such a strong supportive family but for some reason I feel so lonely. 
    I'm truly sorry you both are

    I'm truly sorry you both are going through this.  I'm glad your husband has a positive attitude, something that I truly believes helps with the success of any treatment.  I understand the feeling of loneliness in spite of the support you have around you.  I had the support of many around me and still felt like I was walking the path alone until I could wrap my head around being told "You have cancer".  It felt like I was moving down the path chosen for me, and that suddenly I took a hard left while the rest of life continued on its journey.  And one minute I would be fine, the next a sobbing mess, the next angry.  But I had two young boys to worry about who would end up living with a dad who had already lost his relationship with one son and ruined the life of the other (I was and still am a single mom).  It took every bit of faith in me and the belief that ultimately my fate was not in my hands to give me the strength to put one foot in front of the other and carry on.  I put my cancer on ignore in front of others, and broke when no one was around.  I prayed hard, got angry with God, and begged to at least let me get my sons to their 18th birthdays so they could legally make their own choices.  I shared this with no one  even though all those who knew me were so caring and supportive.  You will eventually be able to wrap your head around what's happening, just not right now.  Cancer is a very personal journey for both the one who has the disease and those who care, and it takes awhile for the shock of the diagnosis to wear off.  Knowing that you're not alone won't keep the feelings of lonliness from creeping in.  What helped me was focusing on my boys and living my life with some tweaks from my original plans, and believeing that the light at the end of the tunnel wasn't another train coming to hit me.  It wasn't as easy as I'm making it sound, and the fear sometimes still sets in and I go to that lonely spot again.  Your fear hasn't made you lose your senses.  What you're feeling is perfectly normal.  

  • northa914
    northa914 Member Posts: 100
    #7
    n_d said:

    Scared

    It's a roller coaster of emotions. we've know each other since we were teens. Only guy I've ever dated. Married for 8 years. 2 kids. Life was just perfect. Then boom, felt like we were shot in the head. 

     

    I still can't understand why this is happening. What plans the almighty has for us. I trust him completely, he will show us the way. I just have to be strong for my kids.

     

    My husband is my hero. He is so positive and says it is unfortunate he has some unwanted guests in his body but all that he is responsible for is to take the treatment and the rest will fall in its place. I wish I have his strength and attitude. 

     

    I am scared and not in my senses. I have such a strong supportive family but for some reason I feel so lonely. 
    carcinoid.org

    I forgot to mention thiswebsite that has some good information.  It was recommended to me by my neuroendocrine specialist.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
    #8
    northa914 said:

    I'm truly sorry you both are

    I'm truly sorry you both are going through this.  I'm glad your husband has a positive attitude, something that I truly believes helps with the success of any treatment.  I understand the feeling of loneliness in spite of the support you have around you.  I had the support of many around me and still felt like I was walking the path alone until I could wrap my head around being told "You have cancer".  It felt like I was moving down the path chosen for me, and that suddenly I took a hard left while the rest of life continued on its journey.  And one minute I would be fine, the next a sobbing mess, the next angry.  But I had two young boys to worry about who would end up living with a dad who had already lost his relationship with one son and ruined the life of the other (I was and still am a single mom).  It took every bit of faith in me and the belief that ultimately my fate was not in my hands to give me the strength to put one foot in front of the other and carry on.  I put my cancer on ignore in front of others, and broke when no one was around.  I prayed hard, got angry with God, and begged to at least let me get my sons to their 18th birthdays so they could legally make their own choices.  I shared this with no one  even though all those who knew me were so caring and supportive.  You will eventually be able to wrap your head around what's happening, just not right now.  Cancer is a very personal journey for both the one who has the disease and those who care, and it takes awhile for the shock of the diagnosis to wear off.  Knowing that you're not alone won't keep the feelings of lonliness from creeping in.  What helped me was focusing on my boys and living my life with some tweaks from my original plans, and believeing that the light at the end of the tunnel wasn't another train coming to hit me.  It wasn't as easy as I'm making it sound, and the fear sometimes still sets in and I go to that lonely spot again.  Your fear hasn't made you lose your senses.  What you're feeling is perfectly normal.  

    I would like to thank you,

    I would like to thank you, northa.  You did such a beautiful job of compairng "in the moment" to "looking back" that I wish we could gift on anyone new to the beast.  

    I try to live with the guidance "you never know what someone is going through" and even on top of cancer, there are a million other stories.  A young mother, a single mother, deaths of other family members, the list goes on.

    Thank you for sharing with us.

  • n_d
    n_d Member Posts: 5
    #9
    northa914 said:

    I'm truly sorry you both are

    I'm truly sorry you both are going through this.  I'm glad your husband has a positive attitude, something that I truly believes helps with the success of any treatment.  I understand the feeling of loneliness in spite of the support you have around you.  I had the support of many around me and still felt like I was walking the path alone until I could wrap my head around being told "You have cancer".  It felt like I was moving down the path chosen for me, and that suddenly I took a hard left while the rest of life continued on its journey.  And one minute I would be fine, the next a sobbing mess, the next angry.  But I had two young boys to worry about who would end up living with a dad who had already lost his relationship with one son and ruined the life of the other (I was and still am a single mom).  It took every bit of faith in me and the belief that ultimately my fate was not in my hands to give me the strength to put one foot in front of the other and carry on.  I put my cancer on ignore in front of others, and broke when no one was around.  I prayed hard, got angry with God, and begged to at least let me get my sons to their 18th birthdays so they could legally make their own choices.  I shared this with no one  even though all those who knew me were so caring and supportive.  You will eventually be able to wrap your head around what's happening, just not right now.  Cancer is a very personal journey for both the one who has the disease and those who care, and it takes awhile for the shock of the diagnosis to wear off.  Knowing that you're not alone won't keep the feelings of lonliness from creeping in.  What helped me was focusing on my boys and living my life with some tweaks from my original plans, and believeing that the light at the end of the tunnel wasn't another train coming to hit me.  It wasn't as easy as I'm making it sound, and the fear sometimes still sets in and I go to that lonely spot again.  Your fear hasn't made you lose your senses.  What you're feeling is perfectly normal.  

    Thankyou

    i am sorry for what you had/are going through. I hope you live for 100 years and see your boys graduate, get married and have kids :) I will pray for you.

    i cannot Thankyou enough for your words. Like you said I will feel better once I accept things. I hope I get into that phase soon. I am too worried that my health will deteriorate if I am too long in this phase. My kids need me, and I need to take care of me to be able to take care of them.

    There is so much little info on high grade Neuroendocrine carcinoma which is different from slow growing well differentiated carcinoid. I trying to find resources online to help me gain knowledge about the disease. Thankyou for the information.

     

  • northa914
    northa914 Member Posts: 100
    #10
    n_d said:

    Thankyou

    i am sorry for what you had/are going through. I hope you live for 100 years and see your boys graduate, get married and have kids :) I will pray for you.

    i cannot Thankyou enough for your words. Like you said I will feel better once I accept things. I hope I get into that phase soon. I am too worried that my health will deteriorate if I am too long in this phase. My kids need me, and I need to take care of me to be able to take care of them.

    There is so much little info on high grade Neuroendocrine carcinoma which is different from slow growing well differentiated carcinoid. I trying to find resources online to help me gain knowledge about the disease. Thankyou for the information.

     

    Dana Farber

    If you haven't already, maybe you can speak with a liaison at the Dana Farber Institute's progam that specializes in neurodendocrine and carcinoid tumors. Their cancer center may have some information to give you, and perhaps some support groups or facilities you can contact if that's something you're interested in. You're so right about your health, many times caregvivers forget to take care of themselves because they're so worried about us with the disease.  Take the time to absorb all of this and grieve, take time for YOU and don't feel selfish when you do.   You actually have suffered somewhat of a death, a death of the life you and your husband had planned.  When you're ready you'll be able to pick yourself up and move forward again.  Please feel free to PM me through this site.  I don't log on often, and happened to do so a few days after your post.  If you send me a private message, an email will be sent to let me know.

    Take care, you and your husband will be in my thoughts and prayers.

  • Dewzee7
    Dewzee7 Member Posts: 1
    #11
    n_d said:

    Thankyou

    i am sorry for what you had/are going through. I hope you live for 100 years and see your boys graduate, get married and have kids :) I will pray for you.

    i cannot Thankyou enough for your words. Like you said I will feel better once I accept things. I hope I get into that phase soon. I am too worried that my health will deteriorate if I am too long in this phase. My kids need me, and I need to take care of me to be able to take care of them.

    There is so much little info on high grade Neuroendocrine carcinoma which is different from slow growing well differentiated carcinoid. I trying to find resources online to help me gain knowledge about the disease. Thankyou for the information.

     

    Aggressive stage 4 NEC

    I am so sorry to learn about your husband and what your family must be going through.  My father was diagnosed the first of January with stage 4 highly aggressively NEC with an eight cm mass to his liver. His Onocologist gave him a very grim prognosis. It's been difficult for me to wrap my head around this rare form of cancer bc he has not been sick or have any signs. it's so difficult to find any good information on this type of cancer and I've been frantically grasping at straws!! I've read all I can over and over but I'm not finding much. My thoughts and prays are with you! Best wishes to you!! Dena 

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