Ewing's Sarcoma

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  • mike3892002
    mike3892002 Member Posts: 6

    I had it in my 5th rib. had
    I had it in my 5th rib. had surgery after 6 months of chemo and then 6 more months of chemo.. I was pregnant when diagnosed. I just now found this site and it has almost been 3 years since my last chemo treatment. would love to talk

    After effects of Ewings in the Ribs

    Hi:

    If it is possible...I would like to compare notes on treatment, after effects....thanks

    mike3892002@yahoo.com

    Mike, 34 years remission, Ewings on Ribs

     

  • Survivor Perspective

    I was diagnosed with Ewing's Sarcoma just a few days after my 16th birthday. The tumor surrounded my right tibia just below the knee. It was substantial and painful. The Ewing's survival rate at that time was said to be about five percent. So, in December of 1961, one day after the x-rays showed the nature and size of the tumor, my right leg was amputated just above the knee. This is quite a trauma for a teenager (and the shock may have been even more for my mother), but the decisiveness of this action saved my life and I have lived a long and productive life still going strong as I near my 74th birthday. I had a great career, have a happy marriage, two children, and four grandchildren. I walk easily and a lot, and with a hyrdracadence unit most people have no idea I have an artificial leg. I could never be a professional athlete, of course, but there are many things one can choose to do in this life, and having an artificial leg has really not held me back. In some ways it was strangely a success factor because I pushed hard to get a great education and used it to the max for a successful career that has spanned academics, business and government jobs as a manager and department head. So anyway, am posting this note because I want to assure people there can be highly productive lives following an amputation and, indeed, I have no after effects from continuing surgeries, radiation or chemicals since I was never treated with them.

  • dmartinemtp
    dmartinemtp Member Posts: 11
    edited June 2021 #104
    ShannonQ said:

    Hey, so glad to read about your wonderful success story. I am a 26 year old female recently diagnosed (March 2004) with Ewings in my left scapula. It is localized and about 4.5cm. I am going through my second round of chemo. They plan to do surgery in a few months and then on to more chemo. I am being treated at MVC - Medical College of Virginia. I have been very sick and weak at times, but thank God I have good days too. With Ewings being such a rare form of cancer, it can be very difficult finding someone to talk to that is, or has, experienced that same thing I am. I would love to hear from you again. Here's my email address Quesensm@aol.com

    Ewings

    Long Term survivor of Ewings Sarcoma. 

  • dmartinemtp
    dmartinemtp Member Posts: 11
    edited June 2021 #105

    Ewings in the ribs

    Hi:

    If you would like to talk about Ewings in the ribs...I had it 30 plus years ago...at age 16, rib soft tissue sarcoma Ewings.  Radiation 6 weeks, chemo 9 months, surgery.  30 years remsission

    mike3892002@yahoo.com

    Ewings survivor

    That is awesome Mike. I am 27 years out from Ewings sarcoma. I moved to the sunny weather in Florida and it really helps me being

    in the warm weather

    Best, 
    Diana 

  • momewing
    momewing Member Posts: 2 *

    My 24 year old daughter was just diagnosed in May. She is 24 and we live in Spokane WA. She just had her first chemo treatment. She is doing okay how far are you in treatment?

  • lunaasherah
    lunaasherah Member Posts: 1 Member

    hi! I’m 19 with a soft painless lump in my ribs that doesn’t show up on any x rays. wanted to know what symptoms you had that led up to your diagnosis!

  • peppysuzy
    peppysuzy Member Posts: 11 Member

    my son was just dx with ewings sarcoma with possible mets to 2 other areas would love to hear your stories and support hoping he is able to start chemo next week