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GrandmaKaren
GrandmaKaren Member Posts: 3
edited March 2014 in Colorectal Cancer #1
Hi, I am grandma Karen of a 17 yr old with small blue cell neuroendocrine carinoma. He was diagnosed 9/05. Primary site colon and mets to the liver. He has had 10 months of chemo and surgery in June. Removed 18" colon and 1/3 of the liver. In the beginning chemo worked very well and shrunk tumors enough for the surgery. He was on carboplatin and two others up to surgery time. Then the chemo stopped working and tumors returned. Changed chemo to carboplatin and irintecan. As a result knocked down white count to zero and got septic shock. Very sick little man for awhile there. Now he is on is second week of Gencitabine and Venorelbine. He will have a cat scan this week to see if they are working. Have any of you had this chemo and if so, any results ?

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  • mindy10
    mindy10 Member Posts: 182 Member
    #2
    Hi Grandma Karen, Im sorry I dont have any experience on the type of chemo but I just wanted to say im so sorry to hear of your grandson. That is so young to have colon cancer. I pray that they find something that works for him. This is a great forum for support so Im glad you found it. Mindy
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    Welcome, Karen....(I HATE saying that)
    My beast was beaten back by the 'traditional' stuff...I was VERY blessed....
    Sigh, 17, such a young soul!!!!
    I am sending my best, most strongest prayers and vibes....please keep us posted...
    Also, check out the parent site to this one...ACS Home will get you there...
    AND, my fav phone number 1-800-ACS2345....they have oncology nurses that can answer any question...one spent an HOUR with me on my second fight...breast cancer...going thru my path report...

    Hugs, Kathi
  • nanuk
    nanuk Member Posts: 1,358 Member
    #4
    Welcome Karen:I've never heard of this kind of cancer..is it related to Merkel cell carcinoma?
    Also we have a Young Cancer Survivor's forum which you may have noticed. Irrinotecan (SP) is the only chemo I am familiar with, and had to go off it due to side effects. You can get more detailed information on these drugs at Drugs.com,
    but patient feedback is always best.Wish I could help more..there will be someone on this site who will have more experience with those drugs. Best wishes, Bud
  • GrandmaKaren
    GrandmaKaren Member Posts: 3
    #5
    nanuk said:

    Welcome Karen:I've never heard of this kind of cancer..is it related to Merkel cell carcinoma?
    Also we have a Young Cancer Survivor's forum which you may have noticed. Irrinotecan (SP) is the only chemo I am familiar with, and had to go off it due to side effects. You can get more detailed information on these drugs at Drugs.com,
    but patient feedback is always best.Wish I could help more..there will be someone on this site who will have more experience with those drugs. Best wishes, Bud

    Nanuk, I don't know if it is related to Merkel cell. Thank-you for the information.Best of luck to you. Karen

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