LONG TERM SARCOMA SURVIVORS WANTED

sarcomasister
sarcomasister Member Posts: 7
edited March 2014 in Sarcoma #1
I'd like to hear the stories of some long term survivors. Please tell me your story. I'd like to be able to see that this isn't only a dismal disease. Thanks.
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Comments

  • katydid_635
    katydid_635 Member Posts: 3
    6 years in remission from ewing's sarcoma
    hi, my name is katy, i had ewing's sarcoma and i've been in remission for 6 years now. i'm not sure if 6 years is what you meant by long term remission...but that's where i am.
  • sarcomasister
    sarcomasister Member Posts: 7

    6 years in remission from ewing's sarcoma
    hi, my name is katy, i had ewing's sarcoma and i've been in remission for 6 years now. i'm not sure if 6 years is what you meant by long term remission...but that's where i am.

    6 years is awesome!!!
    6 years is awesome!!! Congratulations!! Are there any others?
  • ali_beth
    ali_beth Member Posts: 1
    I'm almost to my 5 yr.
    I'm almost to my 5 yr. remission mark. I am a survivor of osteo genic sarcoma. I had it 5 times.
  • teacher8history
    teacher8history Member Posts: 2
    4 years
    I am just about to reach my 4 year mark in remission from Myxoid Liposarcoma. There is always a little apprehension...but lots of hope!
  • ronny
    ronny Member Posts: 4

    4 years
    I am just about to reach my 4 year mark in remission from Myxoid Liposarcoma. There is always a little apprehension...but lots of hope!

    Almost 10 years
    I am going on 10 years in May. I had Ewings sarcoma, with 2 recurrences with metasis to my lungs. I am currently on a clinical trial with no signs of it.
    Ron
  • asarcoma
    asarcoma Member Posts: 3
    ronny said:

    Almost 10 years
    I am going on 10 years in May. I had Ewings sarcoma, with 2 recurrences with metasis to my lungs. I am currently on a clinical trial with no signs of it.
    Ron

    metastasis to lungs?
    Hi,

    Can you share your experience after metastasis in lungs?. How has been your treatment?. Were they able to remove the tumor in the lungs?.
  • bmscan
    bmscan Member Posts: 37
    10 Years - Liposarcoma
    First tumor 10 years ago. Have had 7 total. Clear for past 2 years.
    ...Beating the odds!

    I have written a short story(?) and posted it under Liposarcoma (or go to my user name)...
  • ronny
    ronny Member Posts: 4
    asarcoma said:

    metastasis to lungs?
    Hi,

    Can you share your experience after metastasis in lungs?. How has been your treatment?. Were they able to remove the tumor in the lungs?.

    metasis to lungs
    Hi, After my first treatment in 1999, the Ewings came back in my lungs in 2003. I had chemo and surgery to remove the spots on my lungs. On the ct scan it showed 8 spots, during surgery they found only 3. 2 were dead from chemo and there was 1 live by my heart. Then in 2006 it returned again the chemo no longer worked. My Dr. in MI sent me to San Antonio to meet with Dr. Anthony Tolcher about starting a new clinical trial called amg 479. I had some lympe nodes involved and spots on the lungs. They started treatment and in 8 days the tumors shrank by 60%. After 8 weeks the pet scan went silent. I still fly to Texas every 3 weeks and get the drug. It is given in my port and has had no major sideeffects. It is a human monocolonal antibody therapy and just attacks the cancer cells. I have been on it since Dec. of 06.
    Ron
  • bellasbell
    bellasbell Member Posts: 6
    Sarcoma survivors
    I had liposarcoma a tumor in my thigh 11cm x 11cm,got chemo/surgery/radiation. That was in summer/2007-Jan/2008. I've been cancer free since then. Although I have had pain and problems with pain still, walking,falling at times, I know Im lucky to be alive. I think I may have been over-radiated and I have alot of tissue/nerve damage. I would love to see a sarcoma group started. There are so many groups for other cancers,when I was looking for info. and help, I couldnt find anything. Im always looking for sarcoma survivors to see if they have had the same experiences as Im having and how they handle the pain,etc. Im continuing to live with on a daily basis. I hope people respond and if anyone knows of a sarcoma survivor group(I live in Tampa,FL)and even the hospital(HLee Moffitt) couldn't find sarcoma groups in Fla.It would be really nice to see how others have dealt with what Im dealing with.
  • cyclegirl
    cyclegirl Member Posts: 1
    clear cell
    Hi-
    I had a rare type of sarcoma called a "clear cell" that primarily affects extremities; I think now it's called distal extremity sarc, or something like that.

    Diagnosed in 1990. So now coming around to my 19th year post! I was 25 in '90, so I was pretty young. Not really a kid, but most definitely not an adult.


    What is your interest?
  • ljgetfit
    ljgetfit Member Posts: 4

    Sarcoma survivors
    I had liposarcoma a tumor in my thigh 11cm x 11cm,got chemo/surgery/radiation. That was in summer/2007-Jan/2008. I've been cancer free since then. Although I have had pain and problems with pain still, walking,falling at times, I know Im lucky to be alive. I think I may have been over-radiated and I have alot of tissue/nerve damage. I would love to see a sarcoma group started. There are so many groups for other cancers,when I was looking for info. and help, I couldnt find anything. Im always looking for sarcoma survivors to see if they have had the same experiences as Im having and how they handle the pain,etc. Im continuing to live with on a daily basis. I hope people respond and if anyone knows of a sarcoma survivor group(I live in Tampa,FL)and even the hospital(HLee Moffitt) couldn't find sarcoma groups in Fla.It would be really nice to see how others have dealt with what Im dealing with.

    synovial sarcoma survivor
    i am a synovial sarcoma survivor. 6 yrs!!! just did Relay 4 LIfe on friday!
  • Jbean3303
    Jbean3303 Member Posts: 1
    10 year osteosarcoma survivor!
    My name is Jill and I have been an osteosarcoma survivor for 10 years now! I decided to try and make a different in the best way I knew how.... Im now an Oncology RN in Philadelphia. Actually, in the same office where I was treated. I now work with a group that does a ton of Sarcoma research trials! Im hoping to get rid of this disease and everything about it.
  • noah
    noah Member Posts: 4
    5 years and counting
    I was diagnosed with Ewings sarcoma in 2003, had chemo and surgery, then more chemo (all at MD Anderson in Houston). Everything has been clear since then, but I still freak out whenever my back/shoulder aches (the tumor was in my scapula).
  • honey123
    honey123 Member Posts: 1
    leiomyosarcoma
    Hi i had a leiomyosarcoma and have been cancer free for 2 and a half years
  • beanmama
    beanmama Member Posts: 3
    Jbean3303 said:

    10 year osteosarcoma survivor!
    My name is Jill and I have been an osteosarcoma survivor for 10 years now! I decided to try and make a different in the best way I knew how.... Im now an Oncology RN in Philadelphia. Actually, in the same office where I was treated. I now work with a group that does a ton of Sarcoma research trials! Im hoping to get rid of this disease and everything about it.

    10 yr survivor!
    Congratulations all around! I am a 9 year osteo survivor too! Did you have it in your femur? Wow, how do you stand on your feet all day if you are an RN? I honestly thought of being a nurse but didn't think my leg could handle it. I have alot of pain still off and on. I sure hope you and your group can eradicate that nasty stuff! How ironic that you are in the same office where you were treated. You go girl!

    Heather
  • Riesbrian7
    Riesbrian7 Member Posts: 1
    Rhabdomyosarcoma Survivor for approximately 24 years
    Didn't see any with this one posted yet, but I'm right around 24 years since I was diagnosed. The rhabdomyosarcoma was located in the back of my head. Keep the chin up, the best advise I can give is not to give up. Everyone knows the sarcomas are bad to have, but attitude helps a lot. I was between the ages 7-8 when I came down with it. My parents did not have the heart to tell me I was terminal. I truly believe that if I had known what the doctors said, I probably would not have made it. Attitude is a lot in the fight, you can not give up. I'm 31 and can say I survived when I was terminal and wasn't going to make it a year. I hope this gives encouragement to you and any others that read this. Good luck with your battle and same to everyone else.

    Brian Ries
  • l_tyner
    l_tyner Member Posts: 1
    synovial sarcoma
    my son is an ten year survior. he was 19 when he was diagnosed with synovial sarcoma in his left foot. we went to the univ of wisconsin, madison, for treatment. treatment consisted of amputation of the foot about 6 inches above the ankle. he didnot receive radiation or chemo, the tumor appeared to be intact. he was followed very closely the first two years after surgery, the doctors wew afraid of a possible return in the lungs. he has adapted to
    his disability well. he works every day and got married three years ago and is the proud father of a five month-old son. today he and his wife are in madison, he is having some burning in his knees. i so hope it is not a return of the cancer, he has been through so much . so hope this can give you some encouragement. lisa
  • cathycarey
    cathycarey Member Posts: 1
    Leiomyosarcoma free for 6 years
    I had a tumor on my thigh, had 3 surgeries to get to clear margins. Only residual problem is that the scar tissue grew into my sciatic nerve and causes nerve pain.
  • dhempflinger
    dhempflinger Member Posts: 2
    l_tyner said:

    synovial sarcoma
    my son is an ten year survior. he was 19 when he was diagnosed with synovial sarcoma in his left foot. we went to the univ of wisconsin, madison, for treatment. treatment consisted of amputation of the foot about 6 inches above the ankle. he didnot receive radiation or chemo, the tumor appeared to be intact. he was followed very closely the first two years after surgery, the doctors wew afraid of a possible return in the lungs. he has adapted to
    his disability well. he works every day and got married three years ago and is the proud father of a five month-old son. today he and his wife are in madison, he is having some burning in his knees. i so hope it is not a return of the cancer, he has been through so much . so hope this can give you some encouragement. lisa

    I have synovial sarcoma also. Had for 10 years now.
    I was first diagnosed in july 1999. Had large softball size tumor under arm pushing on my scapula. Got it removed and zapped by radiation. Then reacurred in my lungs a few months later. Had chemo. Ever since, I've had 5 more reacurrances, mostly in my lungs. First hematologist didn't think I'd live more than 2 years, but here I am on my 10 year mark. First four years were very rough, but do too loving parents, family, and friends still alive and living my life to the fullest.
  • rc dobbs
    rc dobbs Member Posts: 2
    Rhabdomyosarcoma survivor
    I think I qualify as a long-term survivor, 35 years this month. There have been ups and downs during that 35 years due to the aftermath of the cancer but when given a 5% chance of survival at the original diagnosis, I guess life has been pretty good. Diagnosed at the age of 22, I am getting ready to celebrate my 58th birthday Saturday.