Intraabdominal Desmoplastic Small Round Center Tumor IDSRT

tuke
tuke Member Posts: 5
edited March 2014 in Rare and Other Cancers #1
I am writing on behalf of my 15 yr old nephew who has this vary rare cancer. I would like to connect my nephew and his family with anyone else who has this cancer. It would help them immensely.Thank you.

Comments

  • ek015b
    ek015b Member Posts: 1
    #2
    Please tell your nephew that he is not alone. I too suffer from this disease, and it is the most frightening reality I am forced to face also, I'm afraid. However, he must find comfort in the Lord and know that this experience will pave the way for greatness for him once he is free from this illness. I am 21 years old, so I know what he must be going through mentally, but the younger the stronger... this must be remembered.
  • tuke
    tuke Member Posts: 5
    #3
    ek015b said:

    Please tell your nephew that he is not alone. I too suffer from this disease, and it is the most frightening reality I am forced to face also, I'm afraid. However, he must find comfort in the Lord and know that this experience will pave the way for greatness for him once he is free from this illness. I am 21 years old, so I know what he must be going through mentally, but the younger the stronger... this must be remembered.

    Dear ek015b,
    Thank you for your response. I cannot even imagine what you have gone through, although I have seen what my nephew and his family are dealing with. My nephew flies to Sloan-Kettering soon for surgery and we are all scared. I am not sure just where you are in your treatment, but if you would want to email with a 15 year-old, please let me know. His name is Evan and he never complains. He has been through 4 three-day chemos already. I do wonder about his spirituality - afterall he is only 15. Thank you again for emailing and I will keep you in my prayers. And remember you are young, also, so it will add to your strength.
  • Candacew
    Candacew Member Posts: 2
    #4
    My son was just diagnosed with desmoplastic round cell tumor. I am scared and looking to see what if any new treatments or current treatments are available. My son is 14 years old and had one tumor removed last week. Please let me know any info you may have. Thank you
  • Candacew
    Candacew Member Posts: 2
    #5
    ek015b said:

    Please tell your nephew that he is not alone. I too suffer from this disease, and it is the most frightening reality I am forced to face also, I'm afraid. However, he must find comfort in the Lord and know that this experience will pave the way for greatness for him once he is free from this illness. I am 21 years old, so I know what he must be going through mentally, but the younger the stronger... this must be remembered.

    I am so sorry to hear of your situation. My 14 year old son has just been diagnosed with desmoplastic small round tumor and I am trying to get info on treatments and survival. If you can help me with anything I would really appreciate it.. Thank you
  • UberJumper
    UberJumper Member Posts: 3
    #6
    I don't know if this will help, but I found it in my travels searching for help with my GIST. It doesn't have a happy ending, but there seems to be lots of great info.

    http://mypage.uniserve.ca/~bggibson/sara/

    (11 months after this thread was first posted)
  • Kalimac
    Kalimac Member Posts: 2
    #7
    Candacew said:

    My son was just diagnosed with desmoplastic round cell tumor. I am scared and looking to see what if any new treatments or current treatments are available. My son is 14 years old and had one tumor removed last week. Please let me know any info you may have. Thank you

    Some good information and support at:

    http://health.groups.yahoo.com/group/DSRCT

    as well as

    http://www.dsrct.com

    Specialist in DSRCT
    http://www.mskcc.org/prg/prg/bios/207.cfm

    Best wishes to all battling this disease.
  • Jerrila
    Jerrila Member Posts: 1
    #8
    My husband has DSRCT and we are have had surgries,chemo, RFAS, and he is still battling. Is there anything else out there or new info?
  • angelart
    angelart Member Posts: 7
    #9
    Jerrila said:

    My husband has DSRCT and we are have had surgries,chemo, RFAS, and he is still battling. Is there anything else out there or new info?

    Hello all,
    I just joined
    Hello all,
    I just joined this site a couple months ago. I'm really hoping that I may be able to talk to others with experiance with this kind of cancer. I've dealt with it 3 times since I was 11 years old, and it's very hard to find anyone to talk to about it! Please if there is anyone out there that could share their experiances with me I would appreciate it very much.
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator

Discussion Boards