Neuro Endocrine Cancer of Pancreas

HariM
HariM Member Posts: 3 Member
edited March 2014 in Rare and Other Cancers #1
I have recently been diagnosed with Neuro-Endocrine Cancer of the Pancreas.

I have been prescribed Nuclear radiation therapy - Lutetium Dotate Therapy - but am yet to decide what to do.
Has anyone been through this - I would like to share and chat.

Thanks
HariM

Comments

  • mr steve
    mr steve Member Posts: 285
    #2
    NE
    Wife has Surgery and chemo for it but no nuc treatments for it. Where are getting treatment at?
  • pinkrambler62
    pinkrambler62 Member Posts: 1
    #3
    Pancreatic neuroendocrine carcinoma
    My son has MEN1. They found 7 pancreatic lesions. I am looking for an expert.Chemo and radiation are not an option. We have been told to remove his entire pancreas. I am looking for an expert to give a second opinion. Has anyone information to guide me?
    Thank You,
    pinkrambler62
  • mr steve
    mr steve Member Posts: 285
    #4
    pinkrambler62 said:

    Pancreatic neuroendocrine carcinoma
    My son has MEN1. They found 7 pancreatic lesions. I am looking for an expert.Chemo and radiation are not an option. We have been told to remove his entire pancreas. I am looking for an expert to give a second opinion. Has anyone information to guide me?
    Thank You,
    pinkrambler62

    Pink
    Pink,

    Find a treatment center that has treated it. I am slighted to OSU since what they have done for my wife. It was one of 2 centers that were recommended to us the other was M D Anderson.
  • Oneshot
    Oneshot Member Posts: 153 Member
    #5
    pinkrambler62 said:

    Pancreatic neuroendocrine carcinoma
    My son has MEN1. They found 7 pancreatic lesions. I am looking for an expert.Chemo and radiation are not an option. We have been told to remove his entire pancreas. I am looking for an expert to give a second opinion. Has anyone information to guide me?
    Thank You,
    pinkrambler62

    Pinkrambler62
    I do not know where you are located. I'm in Texas and I'm a 2 yr. survivor of stage 3 pancreatic cancer. I went to Texas Oncology (Located at Baylor Hospital) in Dallas.
    They are located at 3535 Worth St. Dallas, Texas 75246-2006. Phone # (214)370-1000.
    My surgeon was Jeffery Lamont. He specialized in the pancreas. Sorry I don't have his phone number but, I'm sure the number I have on here can get his number for you. He did a GREAT JOB on me. Also Mr.Steve listed a couple well noted places. At the very least. They could put you in touch with the correct people in your area.
  • enterpryzman
    enterpryzman Member Posts: 4 Member
    #6
    pinkrambler62 said:

    Pancreatic neuroendocrine carcinoma
    My son has MEN1. They found 7 pancreatic lesions. I am looking for an expert.Chemo and radiation are not an option. We have been told to remove his entire pancreas. I am looking for an expert to give a second opinion. Has anyone information to guide me?
    Thank You,
    pinkrambler62

    Y-90 DOTATOC in Basel, Switzerland
    My wife is an almost 6 year survivor of stage 4 Neuroendocrine Pancreatic Cancer having never been able to have surgery. I am very willing to talk via the phone should you wish, simply email me a phone # to michael@isletcellcancer ( dot ) com
  • carolinagirl70
    carolinagirl70 Member Posts: 1
    #7
    HariM
    I was diagnosed with
    HariM

    I was diagnosed with Neuroendocrine tumors on my pancreas which spread to my liver in March of this year.
    I just finished my 6th chemo treatment on Oct.19th and when I had my last scan the tumors had shrunk significantly! I have another scan this Thurs. and hoping for more good news.

    If you need someone to talk to, vent, etc. Please contact me!

    Tracy
  • BeckyGma
    BeckyGma Member Posts: 5
    #8
    carolinagirl70 said:

    HariM
    I was diagnosed with
    HariM

    I was diagnosed with Neuroendocrine tumors on my pancreas which spread to my liver in March of this year.
    I just finished my 6th chemo treatment on Oct.19th and when I had my last scan the tumors had shrunk significantly! I have another scan this Thurs. and hoping for more good news.

    If you need someone to talk to, vent, etc. Please contact me!

    Tracy

    PINK M.E.N. 1/ZES/Gastrinoma
    hPINK M.E.N. 1/ZES/Gastrinoma
    in 2006-07, my husband was diagnosed with 6 malignant secreting gastinomas around,/on his pancreas. His symptoms were mostly controlled until this year (2012).

    Due to increasing major symptoms, there are more tests to be ran, but in the mean time, he has chosen to begin using several natural health products and has changed his diet to No sugar or flour products, almond (unsweetened) milk, No milk products, and No fruits. He's using products that strengthen the amune system, pancreas, and also things like vitamin C powder with baking soda mixed with sugar free green tea, etc.

    We only wish We would have looked into alternative health remedies much sooner!

    I definitely recommend food changes (which I am sure you have) along with alternative health/natural medicine. I has a contact person who is filled with information and is a cancer survivor himself.
  • antiquelady331
    antiquelady331 Member Posts: 2 Member
    #9

    I have been diagnosed with neurodocrine cancer, being treated with octreotide injections once a month. I am in to second injection. Will have a ct scan in sept to see how it is working. It did spread outside the pancreas to a few places. . The octerocise wil supposedly stop the growth and the spread. Has anyone been treated with this medication and what was your aoudoe.

  • HariM
    HariM Member Posts: 3 Member
    #10

    In am a survivor with Neuroendocrine Tumour of the Pancreas with large volume liver metastasis for 13 years. I have had numerous treatments with different approaches. I have had the octerocide injection treatments along the way - the tumours in the liver had a partial response and then my consultants tried a different regime. The tumour in my pancreas and has been stable for over 10 years.

    Be positive and you will still enjoy a good quality of life.

    Harish.

  • antiquelady331
    antiquelady331 Member Posts: 2 Member
    #11
    https://csn.cancer.org/discussion/comment/1707604#Comment_1707604
    https://csn.cancer.org/discussion/comment/1707604#Comment_1707604
    https://csn.cancer.org/discussion/comment/940253#Comment_940253

    O

    https://csn.cancer.org/discussion/comment/940253#Comment_940253

    Harim, Thank for the information, very encouraging

  • katjano92
    katjano92 Member Posts: 2 Member
    #12
    https://csn.cancer.org/discussion/comment/1707604#Comment_1707604

    Hi Harim. I can't tell you how good it is to hear you've been stable for 10 years. My husband has grade 4 neuroendocrine cancer of the pancreas (mets to the liver, bowel, lungs, bones, kidney). He's only 37 and it feels hopeless. I keep looking for stories of people who've been through similar situations and come out the other side. Hes done surgery, chemo, octreotide, PRRT, now more chemo. The tumors are so stubborn. The PRRT shrunk the tumors by 50% but they grew back within a month. The tumors are now so large they are causing blood sugar issues and it's been really scary. I'd love to just talk with someone who understands what we're going through.

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