I have had Ewings for 8 years

ronny
ronny Member Posts: 4
edited March 2014 in Sarcoma #1
I was just wondering if anyone else is a survivor of Ewings and has had a recurrence. I would like to talk about your treatments and how it affected your life. I currently am on a clinical trial with amazing results and would like to share it to others and possibly help out someone.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the CSN site to look for others with Ewings. You can do this by entering the search word "ewings" in the search bar at the top of this page. You can then browse through the search results. If you find someone you would like to contact, you can do so through the CSN internal email system. For more information on all of the CSN features (including the CSN internal email messaging system), click on the help link at the top of this page.

    Take care and be well,

    Dana
    CSN Dana
  • karla08
    karla08 Member Posts: 1
    #3
    wow 8 years is a long time for ewing's. i was diagosned on March 2007 and will be done in December 2007. Are you by chance the survivor?
  • CAMaura
    CAMaura Member Posts: 719 Member
    #4
    Not sure if you will look this up...it has been so long. I am a newly diagnosed - 03/08. I am to begin chemo in a few weeks. Any info about side effects, how you are handling things?
    And to the person on the clinincal trial...I'm so interested in your thoughts and how you are handling chemo...I hope you can read this...

    Thanks,

    Maura
  • janettp
    janettp Member Posts: 1
    #5
    CAMaura said:

    Not sure if you will look this up...it has been so long. I am a newly diagnosed - 03/08. I am to begin chemo in a few weeks. Any info about side effects, how you are handling things?
    And to the person on the clinincal trial...I'm so interested in your thoughts and how you are handling chemo...I hope you can read this...

    Thanks,

    Maura

    I was diagnosed with ewings in 1991 finished treatment in 1992 so to those newly diagnosed if you need a little inspiration from a 16 year survivor I would love to chat!I remember needing to hear as many survivor stories as possible at that time.
  • superdavejr
    superdavejr Member Posts: 2
    #6
    Ewings Sarcoma
    I was diagnosed with Ewings in 1988. Went through 2 1/2 years of Chemo and a cycle of Radiation treatments. This took care of the tumor. After 5 years was considered cured. Had no problems for 21 years. I was rediagnosed in Febuary 2008. Currently taking Chemo again and I have had a pretty big surgery. Willing to discuss if interested.
  • ronny
    ronny Member Posts: 4
    #7
    superdavejr said:

    Ewings Sarcoma
    I was diagnosed with Ewings in 1988. Went through 2 1/2 years of Chemo and a cycle of Radiation treatments. This took care of the tumor. After 5 years was considered cured. Had no problems for 21 years. I was rediagnosed in Febuary 2008. Currently taking Chemo again and I have had a pretty big surgery. Willing to discuss if interested.

    How is your treatments going?
    Hi,I finally got back to this sight and have read up on everyone. I was interested in your story as it was alot like mine. My tumor was on my 8th rib. I currently am going to San Antonio for a clinical trial. I'm getting amg479. In Dec. 06 I started it as the cancer was in my lungs and a lympenode was involved. After 1 treatment the tumors shrank by 60%. in 8 weeks time they seen no evidence of cancer. I still recive the amg every 3 weeks. There are no sideeffects from it as it is a human monocolonal therapy. I was wondering what type of chemo you are recieving? I am sure you had a long recovery from the surgery. They took out the tumors on my lungs back in 03, but when they came back in 06, the chemo wouldn't work anymore. This treatment saved my life. I will be in touch and best of luck to you and everyone else fighting this disease.
    Ronny

Discussion Boards