Stage 4 sonovial sarcoma

rh8585
rh8585 Member Posts: 5
edited March 2014 in Sarcoma #1
My 15 year old grandson was diagnosed with Synovial Sarcoma last Nov. The tumor in his leg was removed and he had radiation as a follow up and for the nits in both lungs... 10 if I remember correctly. His 6 month follow up shows cancer in both lungs. I'm wondering if anyone has lived with this diagnosis? He's my heart.

Comments

  • BAEdwards
    BAEdwards Member Posts: 3
    #2
    Liviing with Synovial Sarcoma
    Hi,
    I hope your Grandson is doing well. I have been fighting synovial sarcoma for a little over 4 years. I have had 3 surgeries, chemo. twice, radiation once and getting ready to start radiation again. It has matastesized to my lung and lymph nodes. I have been doing ok. I have good and bad days, but try my best to take care of myself and leave the rest up to God. He has brought me this far. If you had any questions, I would be glad to try and help.

    Beth
  • LdG
    LdG Member Posts: 3
    #3
    BAEdwards said:

    Liviing with Synovial Sarcoma
    Hi,
    I hope your Grandson is doing well. I have been fighting synovial sarcoma for a little over 4 years. I have had 3 surgeries, chemo. twice, radiation once and getting ready to start radiation again. It has matastesized to my lung and lymph nodes. I have been doing ok. I have good and bad days, but try my best to take care of myself and leave the rest up to God. He has brought me this far. If you had any questions, I would be glad to try and help.

    Beth

    sarcoma synovial stage 4
    Hi Beth
    My brother has sarcoma synovial. Had already 2 recurrences in one year and now is also in the lungs. He did radio and just finished chemo. Docs want to wait 6 months to decide on lungs' ops. We are desperate as they are unsure.
    He has been treated in Brazil, where he lives. Would you mind sharing what you have done and giving some advice on who to look for treatment in the US, and what else to do? Alternative trials?
    Many thanks and trust all goes well for you.
    Lucile

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