Neuroendocrine cancer

Kawood
Kawood Member Posts: 4
edited March 2014 in Rare and Other Cancers #1
My husband was diagnosed with neuroendocrine pancreatic cancer on Dec. 1st. An attempted whipple took place but was not successful. He is undergoing chemo therapy now. Has anyone had luck with treatment for this type of cancer?

Comments

  • Waving
    Waving Member Posts: 43
    #2
    Hi Kawood - I suggest also trying this Johns Hopkins forum
    http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT and you could also search www.cancergen.com/pancreatic for links to other useful websites
  • roxanne53
    roxanne53 Member Posts: 154
    #3
    Waving said:

    Hi Kawood - I suggest also trying this Johns Hopkins forum
    http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT and you could also search www.cancergen.com/pancreatic for links to other useful websites

    Hello~
    I would also suggest the Johns hopkins forum.
    Also there is: PANCAN.org that also keeps up with the pancreatic cancer stuff and will help with answers to questions if they can.
    best wishes to you
    roxanne53
  • Kawood
    Kawood Member Posts: 4
    #4
    roxanne53 said:

    Hello~
    I would also suggest the Johns hopkins forum.
    Also there is: PANCAN.org that also keeps up with the pancreatic cancer stuff and will help with answers to questions if they can.
    best wishes to you
    roxanne53

    We are planning to attend the PANCAN Symposium in Chicago, April 7th & 8th. Thank-you for the suggestions!
  • Kawood
    Kawood Member Posts: 4
    #5
    Waving said:

    Hi Kawood - I suggest also trying this Johns Hopkins forum
    http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT and you could also search www.cancergen.com/pancreatic for links to other useful websites

    I am glad you told me about the John Hopkins forum, Thanks for the help!
  • roxanne53
    roxanne53 Member Posts: 154
    #6
    Kawood said:

    We are planning to attend the PANCAN Symposium in Chicago, April 7th & 8th. Thank-you for the suggestions!

    That sounds great.
    Let us know how the PANCAN Symposium goes.
    roxanne53
  • isletcell
    isletcell Member Posts: 61 Member
    #7
    Please visit the carcinoid cancer foundations web site and see a specialist!! This cancer needs to be treated very diferently.
  • carcinoidlady
    carcinoidlady Member Posts: 5
    #8
    isletcell said:

    Please visit the carcinoid cancer foundations web site and see a specialist!! This cancer needs to be treated very diferently.

    Islet cell is one of the cancers covered for the 2007 North American Carcinoid Neuroendocrine Conference for Patients and Physicians in Norfolk, Virginia this September 2007.

    It is a 2 and a half day meeting with the United States specialists and those in Canada, the Netherlands, Sweden, and Switzerland.

    The full schedule is on the conference web site www.carcinoidnetconference.org

    A full list of speakers is on the site as well. Conference registration and hotel registration is available directly on the conference web site.

    I know I was best served by attending one of these annual events shortly after I was diagnosed in 2003.
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator
  • George1980
    George1980 Member Posts: 1
    #10
    neuroendocrine pancreatic cancer
    Don't be discouraged, this cancer is treatable, but there to my knowledge is one doctor in the US that specializes in it. Do yourself a favor and keep the reading to a minimum, my niece had neuroendocrine cancer which also started in the pancreas, she had a terrible doctor that had to much pride to reach out to the medical community. Her mother told him numeorus times that there was a doctor, I can't remember if he was in Iowa or Idaho, he knows a great deal about this type of cancer and found a treatment that was making progress with my niece.
    It was through the grace of god that she started getting the right treatment, she suffered a lot because her doctor put her through chemo treatments that are used for other types of cancer, but do not work on NeC. Look up Angela Visone Mudd on facebook (located in KY), she can direct you to this wonderful doctor. Also if blood thinners become a necessary part of treatment !!!BE VERY CAREFUL!!! The day we found out my niece's caner was finally regressing, about a month after the proper treatment was started, she fell and struck her head on a floor; the blood thinners resulted in 2 massive strokes in the brain stem, though her bravery and courage was a testament for us all, this unfortunate accident took her life.
    The cancer is very treatable, just new in the medical world, so not a lot is known about it. Evrything I read was negative, which is precisely why I say do not read about it, there's a lot negative posted on the internet. Angie will be able to effectively direct you to specialists, and more specifically some more inspiring websites to contact people who are going through this same battle. Best of luck, and when and if you have the time please see my facebook page as well I'm George Mudd located in Huntsville, AL; if you look under my likes you'll find the SHannon Alert Cause, a great cause named after my niece that might have saved her life if we knew then what we know now about blood thinners.
  • mr steve
    mr steve Member Posts: 285
    #11
    George1980 said:

    neuroendocrine pancreatic cancer
    Don't be discouraged, this cancer is treatable, but there to my knowledge is one doctor in the US that specializes in it. Do yourself a favor and keep the reading to a minimum, my niece had neuroendocrine cancer which also started in the pancreas, she had a terrible doctor that had to much pride to reach out to the medical community. Her mother told him numeorus times that there was a doctor, I can't remember if he was in Iowa or Idaho, he knows a great deal about this type of cancer and found a treatment that was making progress with my niece.
    It was through the grace of god that she started getting the right treatment, she suffered a lot because her doctor put her through chemo treatments that are used for other types of cancer, but do not work on NeC. Look up Angela Visone Mudd on facebook (located in KY), she can direct you to this wonderful doctor. Also if blood thinners become a necessary part of treatment !!!BE VERY CAREFUL!!! The day we found out my niece's caner was finally regressing, about a month after the proper treatment was started, she fell and struck her head on a floor; the blood thinners resulted in 2 massive strokes in the brain stem, though her bravery and courage was a testament for us all, this unfortunate accident took her life.
    The cancer is very treatable, just new in the medical world, so not a lot is known about it. Evrything I read was negative, which is precisely why I say do not read about it, there's a lot negative posted on the internet. Angie will be able to effectively direct you to specialists, and more specifically some more inspiring websites to contact people who are going through this same battle. Best of luck, and when and if you have the time please see my facebook page as well I'm George Mudd located in Huntsville, AL; if you look under my likes you'll find the SHannon Alert Cause, a great cause named after my niece that might have saved her life if we knew then what we know now about blood thinners.

    NET
    George,

    My wife has been getting treatments at OSU and has made great strides towards what we hope is remission.

    Steve

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