Ewing's Sarcoma

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  • Dewa
    Dewa Member Posts: 2
    edited March 4 #22
    CCS626 said:

    Hey, just wanted to let you know I was diagnosed with ewings at the age of 17 and then again at 19. I am now 24 and waiting for this april when i will be in remission for my fifth year. I would love to chat... my email is nikki62679@aol.com

    hey nikki, i was diagnosed with ewings in april too i was 14 at that time. i had it in 2 places but now i have it in 5 or 5 places, i guess its growing every year.anyways i would love to hear back from you
  • susiep
    susiep Member Posts: 2
    #23
    Dewa said:

    hi, i am also diagnosed with ewings sarcome and i was looking for someone who has this cancer. i would love to hear about your story and i would like to get some information from you too,

    hi, i am a ewing's sarcoma (soft tissue) survivor. I have been in remission for about 7 years now. please let me know if you would like to talk.
  • cathey
    cathey Member Posts: 1
    #24
    eeyoredagaboo said:

    Hello paj,
    My name is Dorothy and I am a Ewings survivor of 23 years now. I was diagnosed right after my 20th birthday. It was in my left femur bone and my tumor was 6 inches long. It didn't spread anywhere though. The doc gave me a 30% chance to survivor and if I did I wouldn't still have my leg. My leg and I are both turning 43 in July!! I have a ton of health problems with the newest one being CHF but I am doing just fine inspite of all the medical problems. I had 21/2 years of chemo and six weeks of radiation. The radiation left my left badly damage but I get around. Please feel free to email me anytime. I just found this website. My address is madorrieeeyore@yahoo.com. I'll be praying for you and your son.

    My son is 35 and was diagosed with ewing sacorma last July and has been undergoing chemo since August and has went through 6 weeks of radiation. He has it in his right femur bone and is about7 cm big. The cancer hasn't spread anywhere else but the tumor has not shrunk either. Did your tumor shrink? The radiologist said this was normal and the only way we could tell if the cancer was gone is if the tumor doesn't grow anymore. I have faith in the lord that my son will go into remission. It is nice to hear from survivors of this cancer. My prayers are with you. Cathey
  • carrie23
    carrie23 Member Posts: 1
    #25
    CCS626 said:

    Hey, just wanted to let you know I was diagnosed with ewings at the age of 17 and then again at 19. I am now 24 and waiting for this april when i will be in remission for my fifth year. I would love to chat... my email is nikki62679@aol.com

    Hey nikki I was 20 when i was diagnosed with ewings and it was located in my pelvic bone. I had limb sparing surgery in dec of 2003 and then it was discovered back around my tailbone in april of 2005. I am 23 now. I would love to talk to someone else who has delt with this twice or anyone else who would like to chat. Email me at carrielynn527@hotmail.com
  • marysorens
    marysorens Member Posts: 9
    #26
    susiep said:

    hi, i am a ewing's sarcoma (soft tissue) survivor. I have been in remission for about 7 years now. please let me know if you would like to talk.

    Hi, there are a few stories from adult Ewing's Sarcoma survivors at hppt://abcsurvivors.net. We are always looking for others to share their stories, or you can join our support group.

    Much HOPE!
    Mary
  • megmal
    megmal Member Posts: 2
    #27
    Debbie123 said:

    Hi. My 18 year old daughter was recently diagnosed with Ewings. I would love to discuss it. How is your son?

    Hi Debbie-I am a Ewings survivor, I was diagnosed 2 days after my 16th birthday-I am now 25 how is your daughter? I would love to talk, my email me MMalagari@gmail.com
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #28
    emmie said:

    hey shelly,
    I was told I had ES when I was fifteen, and like in your case it was localized to a bone in my leg; my fibula. I'm 18 now and have been in remission for two years. I know it is hard, and I can't say it's going to get easier any time soon, but hold on. I can tell you are a very strong person, much stronger than you probably even recognize. If you need someone to talk to, please e-mail me at cworkman@presby.edu I wish you much love and peace
    caroline (emmie)

    My brother has had this cancer since February 2004. he had quemo, surgery and radiation. three tumors came back and the doctors are telling us to expect the worst. if anybody knows about anything that we can do please write to me. it would mean the world to hear from somebody. my address is carolina171917@yahoo.com.
    Thanks
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #29
    susiep said:

    hi, i am a ewing's sarcoma (soft tissue) survivor. I have been in remission for about 7 years now. please let me know if you would like to talk.

    My brother has very aggressive Ewing. I would love to speak with you. my address is carolina171917@yahoo.com
  • Autie
    Autie Member Posts: 1
    #30
    Hello
    I know this is a weird circumstance but my mother was diagnosed with Ewings Sarcoma about 6 months ago.... It aparently is very rare in women her age to get this kind of cancer. I love her with all my heart and I am looking for someone to maybe give me advice or steps that I can take to help her beat this thing.
    thank you
    my e-mail is autumn9@telus.net please respond
  • triciamoore87
    triciamoore87 Member Posts: 1
    #31
    shelly9501 said:

    Hi Somer,
    I had a limb-sparing surgery done in May of this year (2002) My doctor is annoying me so much! He tells me it is still necessary to use crutches, and it is now November. I don't plan to be off crutches and at LEAST limping around until probably February. It is very frustrating. Now when I am just hanging around the house, I limp around instead.
    As for the chemo, it will be a full year of chemo in Feb, and then I will be officially done and :fingers crossed: I will be in remission!
    Take care and if you have any more questions just ask!
    ---Shelly--

    Hi Shelly, my step son will soon be going through limb sparing surgery and i was look for some insight on what this experience is going to be like for him
    ----Tricia----
  • gimpy_girl
    gimpy_girl Member Posts: 2
    #32
    ES
    Hey there I am a 22 f who has been in remission from ES for 2 years now. Mine was in my tibia and I had a full knee replacement. Get in touch w/ me! perko.stephanie@yahoo.com
  • KylieSeitz
    KylieSeitz Member Posts: 6
    #33
    gimpy_girl said:

    ES
    Hey there I am a 22 f who has been in remission from ES for 2 years now. Mine was in my tibia and I had a full knee replacement. Get in touch w/ me! perko.stephanie@yahoo.com

    Just diagnosed
    My daughter is four and she was just diagnosed 11/6/08 with Ewings in her right femur. Just completed our first round of chemo. Will look at surgery in Jan2009.
  • lmsa
    lmsa Member Posts: 1
    #34
    sporti1381 said:

    I'm a survivor of bone cancer as well (High Grade Osteosarcoma) and I was wondering how long it took for you to get back on your feet without a walker, cane, brace..after the surgery? Did you have frustrations from not being able to do what you use to? How long were you in physical therapy? I hope you are doing well and it's true prayers are answered everyday. God Bless You.
    Somer

    loosing the crutches
    I hope I'm commenting in the right way; this is my first post, and I'm replying to someone asking someone else a question -- hope I'm not offending anyone....I had Hodgkins Lymphoma when I was 12. When I was 29, I was diagnosed with a sarcoma on the tip of my femur. I was told this was pretty rare, and I really didn't have anyone to compare stories. That was three years ago (I just found this sight tonight -- I wish I had found it years ago). I had three months of chemo (the kind that requires a week of hospitalization for each treatment), and then had knee replacement and reconstruction. I was told my limp would be lasting and I would probably not be able to return to work full time (I teach, so there's no such thing as part time). I finished with physical therapy, closely following my therapist's instructions and doing those exercises several times each day. I was able to loose my cane (I found it much more offensive than my crutches) two months earlier than planned, and I'm back in my third grade classroom everyday. I can even wear cute, not so sensible shoes some days. Following the directions of my therapist and doctors (second only to prayer) helped me recover much more quickly than oringinally thought. Also, I think medical providers give the worst case scenerio so that you're not extremely disappointed (like telling you it will take longer to recover).
  • angelart
    angelart Member Posts: 7
    #35
    Hello,
    I'm fairly new to this site. I signed up hoping to chat with others who may have had similar experiances to share. As it is hard to find others with my kind of cancer. At 11 years old I was diagnosed with Desmoplastic round cell cancer of the soft tissue. At the time it was 1995 and there had only been 12 others in the u.s. diagnosed with the same cancer. With a series of different chemo's I went in to remission for 10, and I had a relapse. This time I was told that the cancer I had is rare and aggressive and a variation of a cancer called Ewing's Sarcoma. We tried a different kind of treatment and radiation. And was able to go a year and it came back. Currently I just had my last surgery and treatment of November of last year and have been cancer free for the last few months. We are hoping for the best but its been really hard for me the last few months, due to the mental scarring that wont heal. I'm really hoping that by sharing my own experiances with this cancer, and reading others that I can really gain a new perspective and help me understand things with a better frame of mind. I would really enjoy talking to anyone willing to share their experiances.

    Email: angelart83@yahoo.com
  • alsm
    alsm Member Posts: 3
    #36
    angelart said:

    Hello,
    I'm fairly new to this site. I signed up hoping to chat with others who may have had similar experiances to share. As it is hard to find others with my kind of cancer. At 11 years old I was diagnosed with Desmoplastic round cell cancer of the soft tissue. At the time it was 1995 and there had only been 12 others in the u.s. diagnosed with the same cancer. With a series of different chemo's I went in to remission for 10, and I had a relapse. This time I was told that the cancer I had is rare and aggressive and a variation of a cancer called Ewing's Sarcoma. We tried a different kind of treatment and radiation. And was able to go a year and it came back. Currently I just had my last surgery and treatment of November of last year and have been cancer free for the last few months. We are hoping for the best but its been really hard for me the last few months, due to the mental scarring that wont heal. I'm really hoping that by sharing my own experiances with this cancer, and reading others that I can really gain a new perspective and help me understand things with a better frame of mind. I would really enjoy talking to anyone willing to share their experiances.

    Email: angelart83@yahoo.com

    Ewings
    Would you like me to e-mail you? I had Ewings Sarcoma 33 years ago, I'm a survivor. Let me know and I will write you.
  • alsm
    alsm Member Posts: 3
    #37
    KylieSeitz said:

    Just diagnosed
    My daughter is four and she was just diagnosed 11/6/08 with Ewings in her right femur. Just completed our first round of chemo. Will look at surgery in Jan2009.

    Your daughter
    How is your daughter doing? I had mine in my left femur 33 years ago. Hope all is well!
  • angelart
    angelart Member Posts: 7
    #38
    alsm said:

    Ewings
    Would you like me to e-mail you? I had Ewings Sarcoma 33 years ago, I'm a survivor. Let me know and I will write you.

    Yes I would like to hear
    Yes I would like to hear about your experiances with it! Thank you so much!
  • bobcummings
    bobcummings Member Posts: 2
    #39
    angelart said:

    Yes I would like to hear
    Yes I would like to hear about your experiances with it! Thank you so much!

    Ewings Survivor
    Hello,
    I am ES survivor of 28 years now. I was diagnosed at 16 years old in May of 1981. I had 6 weeks of radiation, followed by 2 years of chemotherapy. Chemotherapy consisted of Cytoxan, Vincristine, and Adriamycin administered every three weeks. My tumor was in my left hip and was very agressive. The doctors gave me 50% chance to make it six months. I became quite sick and very depressed during chemotherapy, but I used hypnotherapy and it really helped. The radiation caused my leg to break and then they put a steel rod my femur. I was on crutches for nearly five years. I still walk with a limp, but no crutches. Last December I walked a half marathon with my wife in Las Vegas. I never would have thought I could do something like that. I have recently become active in the Relay for Life and it has been great. I would gladly talk with you or anyone. Please email me at bcummings101@gmail.com.

    Bob
  • AnnabelK
    AnnabelK Member Posts: 2
    #40
    bobcummings said:

    Ewings Survivor
    Hello,
    I am ES survivor of 28 years now. I was diagnosed at 16 years old in May of 1981. I had 6 weeks of radiation, followed by 2 years of chemotherapy. Chemotherapy consisted of Cytoxan, Vincristine, and Adriamycin administered every three weeks. My tumor was in my left hip and was very agressive. The doctors gave me 50% chance to make it six months. I became quite sick and very depressed during chemotherapy, but I used hypnotherapy and it really helped. The radiation caused my leg to break and then they put a steel rod my femur. I was on crutches for nearly five years. I still walk with a limp, but no crutches. Last December I walked a half marathon with my wife in Las Vegas. I never would have thought I could do something like that. I have recently become active in the Relay for Life and it has been great. I would gladly talk with you or anyone. Please email me at bcummings101@gmail.com.

    Bob

    Hi,
    I have just recently
    Hi,

    I have just recently been diagnosed with Ewing sarcoma of my larynx. I know that it is a rare cancer to begin with, affecting only 250 people per year, but I am only the second person in the world to have this cancer in my larynx. The other case was a 74 year old Japanese man. I feel a bit like a lab rat! The doctors are running all sorts of body scans to make sure that it isn't in other areas because it typically is located in bones. If my cancer is localized to my larynx then the doctors will give me chemotherapy and possible radiation if the chemo doesn't shrink the tumor, then ultimately, surgery. There is a possibility that I will lose total use of my voice box if they have to take out my larynx. The doctors will do everything they can to make sure this will not happen because I am only 21 years old. Right now the only thing I can do is be positive :-) I am looking to talk with anyone about their experience. Feel free to share!

    Annabel
  • Unknown
    Unknown
    #41
    This comment has been removed by the Moderator

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