34yr old recently disgnosed with Duodenal Cancer

Reini
Reini Member Posts: 22 Member
edited March 2014 in Colorectal Cancer #1
Hello is there anyone out there who has or knows anyone who has been disgnosed with Duodenal Cancer? ( start of small colon just after the stomach) My husband was diagnosed Nov 04 4 weeks after our first born nany Mia Grace was born. His cancer was diagnosed as stage 3 after he underwent a 10 hr 'whipple resection' operation removing part of his pancreas, duodenum gall bladder and part of his stomach he is currently on 6 mth chemo of cpt11, 5fu and leucovorin. Bt because his cancer is so rare they do not have a protocol for it, so they are treating it like a colorectal cancer. We have not been able to find anyone with the same cancer. The oncologist thinks it is part of a syndrome called hnpcc they want us to do genetic testing to check if it the cause. Has anyone had this testing?
Hope to hear from you soon
Take care
Bel, Reini and little mia grace

Comments

  • spongebob
    spongebob Member Posts: 2,565 Member
    #2
    Reini -

    Me again... I'm not a doctor, but I wonder why they would want him to do genetic testing to determine the treatment regime. Seems like they could do studies on the actual tumor to figure out what type of cancer it is and decide upon the best chemo based on those results.

    Just my two cents-worth.

    Keeping you, Bel and Mia Grace in my prayers

    - SpongeBob
  • jana11
    jana11 Member Posts: 705
    #3
    Hi. Sorry to hear about all this. Geez, a whipple resection is a biggie! I am 35 and was diagnosed 3 years ago with stage 3 rectal cancer. I am doing very well - now stage 4, but so far so good.

    I don't have any information for you. I just wanted to welcome you and wish and your family all the best.

    Come back if you have any questions.

    I put you all on my prayer list. A friend of mine told me prayers are even more powerful when done all over the world, at all times throughout the day.

    Take care, jana
  • nettie4
    nettie4 Member Posts: 145
    #4
    hello there. first you could have second opinion done on the tumor and have another doc look at the films. i dont know if you did go or are by a major cancer center but that would help to get an opinion on the dx. my grandma had a whipple too and she had neuroendocrine carcinoma which started out as ampullary cancer and her whole duodenal was full of it but she is doing great. yes it is a rare cancer but to treat it as a colon cancer i would question in my humble opinion. i am stage 4 colon cancer with 2 small children and i am 36 so i know how anxious you must be. take care

    nettie
  • Reini
    Reini Member Posts: 22 Member
    #5
    spongebob said:

    Reini -

    Me again... I'm not a doctor, but I wonder why they would want him to do genetic testing to determine the treatment regime. Seems like they could do studies on the actual tumor to figure out what type of cancer it is and decide upon the best chemo based on those results.

    Just my two cents-worth.

    Keeping you, Bel and Mia Grace in my prayers

    - SpongeBob

    hi spongebob
    they said that the genetic testing would help them work out what chemo to use apparently 5fu by itself is worse for microsatellite unstable tumours
    thanks for your response can only find medical reports on 70 plus patients with duodenal cancer and the prog looks terrible
  • spongebob
    spongebob Member Posts: 2,565 Member
    #6
    Reini said:

    hi spongebob
    they said that the genetic testing would help them work out what chemo to use apparently 5fu by itself is worse for microsatellite unstable tumours
    thanks for your response can only find medical reports on 70 plus patients with duodenal cancer and the prog looks terrible

    Reini -

    If it is any comfort, I also have the same microsatellite unstable trait; the "quality assurance" mechanism in the cells doesn't work and allows some "factory seconds" to slip by which replicate like mad. My tumors (3, all about 4cm), although not actually in the duodenum, were located in/outside both the ascending (right) and transverse colon. Location, coupled with my (youthful) age prompted them to test me for HNPCC.

    I had a right hemicolectemy and then a regime of 5FU and Leucovorin (I don't believe they were doing FOLFOX back then - or at least it wasn't offered to me). For what it's worth, I have been NED since 2002, save a couple of bleeding polyps removed a couple months ago.

    I am on an annual colonoscopy surveillance regimen.

    Hope this makes things a little brighter for you!

    Cheers

    - SpongeBob
  • Reini
    Reini Member Posts: 22 Member
    #7
    spongebob said:

    Reini -

    If it is any comfort, I also have the same microsatellite unstable trait; the "quality assurance" mechanism in the cells doesn't work and allows some "factory seconds" to slip by which replicate like mad. My tumors (3, all about 4cm), although not actually in the duodenum, were located in/outside both the ascending (right) and transverse colon. Location, coupled with my (youthful) age prompted them to test me for HNPCC.

    I had a right hemicolectemy and then a regime of 5FU and Leucovorin (I don't believe they were doing FOLFOX back then - or at least it wasn't offered to me). For what it's worth, I have been NED since 2002, save a couple of bleeding polyps removed a couple months ago.

    I am on an annual colonoscopy surveillance regimen.

    Hope this makes things a little brighter for you!

    Cheers

    - SpongeBob

    Hi Spongebob,
    THanks for your reply, they seem to think the prognosis is better for unstable tumours but not sure why -
    Did you have any lymph nodes involved.
    I know that your cancer was in the colon, but the oncologist has said that the risk with HNPCC also includes the small intestine Id ask your specialist whether having an endoscopy (how they found mine) once every few years would be a good idea. They do it the same time when you are under.
    I already have salary continuance insurance but have been told by genetic councillor that they have the option yearly to continue with a persons cover in Aus where I live if I do a genetic test. Understand your reasons for not having a test done but more for the future if we have the opportunity to have a brother or sister for our baby then would want to go down ivf track as genetic councillor suggested, know its like playing god not sure what to do.
    Just got to get through next 5 years first, oncologist said 5 years is when she can safely say I am cured
    ANyway last chemo treatment tommorrow infusion pump out on wednesday thought this day would never come
    going to go down to victoria on a road trip with Belinda and Mia, next tests, pet scan ct and colonoscopy in November
    So goo d to find an 'unstable' mate thought I was the only one!
    Reini
    Reini
  • spongebob
    spongebob Member Posts: 2,565 Member
    #8
    Reini said:

    Hi Spongebob,
    THanks for your reply, they seem to think the prognosis is better for unstable tumours but not sure why -
    Did you have any lymph nodes involved.
    I know that your cancer was in the colon, but the oncologist has said that the risk with HNPCC also includes the small intestine Id ask your specialist whether having an endoscopy (how they found mine) once every few years would be a good idea. They do it the same time when you are under.
    I already have salary continuance insurance but have been told by genetic councillor that they have the option yearly to continue with a persons cover in Aus where I live if I do a genetic test. Understand your reasons for not having a test done but more for the future if we have the opportunity to have a brother or sister for our baby then would want to go down ivf track as genetic councillor suggested, know its like playing god not sure what to do.
    Just got to get through next 5 years first, oncologist said 5 years is when she can safely say I am cured
    ANyway last chemo treatment tommorrow infusion pump out on wednesday thought this day would never come
    going to go down to victoria on a road trip with Belinda and Mia, next tests, pet scan ct and colonoscopy in November
    So goo d to find an 'unstable' mate thought I was the only one!
    Reini
    Reini

    LOTS of "unstable" folks here - especially my pal Kanga - who lives in SA.

    I get an endo at the same time I get a colonoscopy. I always make sure they do the endo first, just in case they forget to change scopes!

    Since I am in the US military, my medical treatment is covered - for now. I have to think about when I retire though.

    Have a great day.

    - SpongeBob - your "Unstable Mate"
  • CAMaura
    CAMaura Member Posts: 719 Member
    #9
    Hey Reini -

    Gonna send you a curve ball....something other than traditional/conventional western medicine. Have you thought of adding in a nutritional aspect to your care? There is so much out there about how a specific way of eating (actually - just incrdibly healthfully) can create an situation within our system that cancer doesn't like or has a hard time sustaining itself. It is worth a thought. And as a person who has recently undertaken some of the changes, it makes me feel good to be working on my own care.

    Let me know what you think. There are a few other people here who are the gurus....and there are good resources on line for you as well.

    Have a great day!
    Cheers,
    Maura
  • Reini
    Reini Member Posts: 22 Member
    #10
    CAMaura said:

    Hey Reini -

    Gonna send you a curve ball....something other than traditional/conventional western medicine. Have you thought of adding in a nutritional aspect to your care? There is so much out there about how a specific way of eating (actually - just incrdibly healthfully) can create an situation within our system that cancer doesn't like or has a hard time sustaining itself. It is worth a thought. And as a person who has recently undertaken some of the changes, it makes me feel good to be working on my own care.

    Let me know what you think. There are a few other people here who are the gurus....and there are good resources on line for you as well.

    Have a great day!
    Cheers,
    Maura

    would love any nutrition tips maura, we have got into the diet thing in a big way. The only thing the oncologistsaid was not to overload on vitamin supplements during chemo. Have been having 750ml of juice (celer]'y,carrot and apple a day during the good week of chemofortnight, protein supplement and loads of organic fruit veges fish and chicken. The oncologist wouldnt go into diet very much except she agreed that red meat and cured meats should not be eaten often or at all with my condition. Going to go up to Brisbane ( live in Sydney Aus.) to meet a dr called Ruth Cillento she has a book called heal cancer she is into nutriiton in a big way. The way I look at it the only way we can have some input in the fight is to be positive, meditate to reduce stress, exercise when you can and eat well to get our immune system in the best shape possible to fight
    god bless, reini, bel and mia
  • AllyPaul
    AllyPaul Member Posts: 4
    #11
    cancer
    I know your posts were a while ago, I just wondered how your husband is doing. Mine (aged 40) has just been diagnosed w/ Ampullary cancer and is scheduled for a whipple next week.
  • simkor
    simkor Member Posts: 17
    #12
    Hi, Just wondering how ur
    Hi, Just wondering how ur hubby is going? My husband(Simon 33) was disgnosed 10 weeks ago with duodenal cancer which had spread. He had a whipples resection which went wrong & he nearly died. They got all the cancer out :). Just wondering if u can tell me bout ur hubbys recovery. Simon was in hospital 2 months & has a nurse who comes to our house now hes home. Have found it hard to find info bout recovery.
    Thanx Korina
  • simkor
    simkor Member Posts: 17
    #13
    AllyPaul said:

    cancer
    I know your posts were a while ago, I just wondered how your husband is doing. Mine (aged 40) has just been diagnosed w/ Ampullary cancer and is scheduled for a whipple next week.

    Hi, How is ur hubby doing?
    Hi, How is ur hubby doing? My husband was diagnosed 10 weeks ago with duodenal cancer & had a whipples 9 wks ago. Just wondering if u have any info on the recovery.
    Thanx Korina
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #14
    simkor said:

    Hi, Just wondering how ur
    Hi, Just wondering how ur hubby is going? My husband(Simon 33) was disgnosed 10 weeks ago with duodenal cancer which had spread. He had a whipples resection which went wrong & he nearly died. They got all the cancer out :). Just wondering if u can tell me bout ur hubbys recovery. Simon was in hospital 2 months & has a nurse who comes to our house now hes home. Have found it hard to find info bout recovery.
    Thanx Korina

    Simkor
    Please note this thread / post was from almost 5 years ago and the op never returned. I doubt you'll get them to answer.

    Diane
  • tom88
    tom88 Member Posts: 17
    #15
    simkor said:

    Hi, Just wondering how ur
    Hi, Just wondering how ur hubby is going? My husband(Simon 33) was disgnosed 10 weeks ago with duodenal cancer which had spread. He had a whipples resection which went wrong & he nearly died. They got all the cancer out :). Just wondering if u can tell me bout ur hubbys recovery. Simon was in hospital 2 months & has a nurse who comes to our house now hes home. Have found it hard to find info bout recovery.
    Thanx Korina

    the things I've learned
    Hi Simkor,

    My mother had ileal adenocarcinoma. In her last fight against cancer, we tried giving her fresh vegetable juices. You'll find some very useful info on this board about what kind of juices (and diet in general) are helpful for cancer recovery and control. Things that come to mind are carrots, beats, lettuce, spinach, brown rice, apples. My mother was also very active when she could (ie. off chemo), she walked around a 10acre park near our house at least 10 times everyday, I am certain that's what made her so strong physically and emotionally. Stay optimistic, but always be vigilant.

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