RHABDOMYOSARCOMA

dana1969
dana1969 Member Posts: 1
edited March 2014 in Sarcoma #1
HI,
I AM LOOKING FOR ADULTS WITH RHABDOMYOSARCOMA. IF YOU WOULD LIKE TO TALK, EMAIL ME AT DPJERSEY@AOL.COM
«134

Comments

  • LastAngel
    LastAngel Member Posts: 4
    #2
    dana i just sent you a email ..check it and see if i sent it to the right addy cynthia
  • bradneilson
    bradneilson Member Posts: 6
    #3
    Hi I am a 42 yr old father of a 21 yr old son who was recently diagnosed with stage 1 Rhabdo. He is currently undergoing VAI chemo. We live in Australia. We grew up together and he is everything to me, I am very worried about him, though I have faith in the Lord. What lies ahead. He is a well built, active youngster. Will he recover fully after chemo? What was your cancer and what Chemo protocol were you on? Regards Brad
  • tmquinn
    tmquinn Member Posts: 1
    #4
    Hi dana. I was diagnosed with pleomorphic rhabdomyosarcoma in '02. I just put up a page at www.flasy.net.

    Bill
  • K_van
    K_van Member Posts: 2
    #5
    tmquinn said:

    Hi dana. I was diagnosed with pleomorphic rhabdomyosarcoma in '02. I just put up a page at www.flasy.net.

    Bill

    Hey everyone, took me forever to find the reply button on here! Anyways, I was diagnosed with alveolar rhabdomyosarcoma in Feb 2002 - had it in the breast. I went through agressive therapy (chemo --VACIME, surgery, radiation - all of 'em!) throughout most of 2002 and things have been good so far. I really suggest you join the RHABDO-KIDS mailing list - everyone on there is either a rhabdo survivor or are parents of children with rhabdo. Loads of info on there and support. http://listserv.acor.org/archives/rhabdo-kids.html <--- go to that URL to sign up (it's free of course)
  • tldunn
    tldunn Member Posts: 1
    #6
    Dana, I'm hoping that this email finds you in good health! My husband has pleomorphic rhabdomyosarcoma recurrence after about 1 year. He is thinking about chemo now. Initially he had surgery and radiation for his leg - but now it is adrenal. Anyone out there with this sort of experience?
  • leterbuck2
    leterbuck2 Member Posts: 2
    #7
    My dad was diagnosed with Rhab in March 2003. I, too am looking for more info about adults with this. He is 60 years old and going thru all sorts of treatments. Someone, please help!
  • mldresse
    mldresse Member Posts: 1
    #8
    HI,I was 24 and was diagnosed with Rhabdomyosarcoma I'll be 26 this June. I went through almost a year of treatment and I'm now in remission. I had stage 3 embryonal in my right cheek.
  • blueydgirl
    blueydgirl Member Posts: 3
    #9
    leterbuck2 said:

    My dad was diagnosed with Rhab in March 2003. I, too am looking for more info about adults with this. He is 60 years old and going thru all sorts of treatments. Someone, please help!

    My father has recently been diagnosed with pleomorphic rhabdomyosarcoma. He is 62 years old. I have been reading up on all the treatments and all about it, tracking down expert advice. Would be keen to stay in contact with other adults with similar situations.
  • karendenn
    karendenn Member Posts: 1
    #10
    blueydgirl said:

    My father has recently been diagnosed with pleomorphic rhabdomyosarcoma. He is 62 years old. I have been reading up on all the treatments and all about it, tracking down expert advice. Would be keen to stay in contact with other adults with similar situations.

    I know this was an old message but my husband was recently diagnosed with Pleomorphic rhabdomyosarcoma as well and also trying to find others.
  • zekebird
    zekebird Member Posts: 1
    #11
    karendenn said:

    I know this was an old message but my husband was recently diagnosed with Pleomorphic rhabdomyosarcoma as well and also trying to find others.

    How is your husband doing?
    I just joined this site and am battleing this darn cancer at the ripe old age of 42. Looking for other folks who were diagnosed over the age of 25.
  • Sherry64
    Sherry64 Member Posts: 5
    #12
    zekebird said:

    How is your husband doing?
    I just joined this site and am battleing this darn cancer at the ripe old age of 42. Looking for other folks who were diagnosed over the age of 25.

    44 and fighting
    Where is the cancer located? Mine was in the knee. Went through radiation and surgery. Let me know.
  • goodspirit
    goodspirit Member Posts: 1
    #13
    mldresse said:

    HI,I was 24 and was diagnosed with Rhabdomyosarcoma I'll be 26 this June. I went through almost a year of treatment and I'm now in remission. I had stage 3 embryonal in my right cheek.

    How are you doing
    i havent been on the website for a couple of yrs but so i'm trying to get used to the new layout. How are you doing? I hope this e-mail finds you well. My husband had Rhabdo in 2004. My heart goes out to you. always, Amy
  • Unknown
    Unknown
    #14
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #15
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #16
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #17
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #18
    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #19
    This comment has been removed by the Moderator
  • uscsandrar
    uscsandrar Member Posts: 2
    #20
    goodspirit said:

    How are you doing
    i havent been on the website for a couple of yrs but so i'm trying to get used to the new layout. How are you doing? I hope this e-mail finds you well. My husband had Rhabdo in 2004. My heart goes out to you. always, Amy

    My sister was just diagnosed with Rhabdomyosarcoma
    Hello. My sister was just diagnosed with Rhabdo and someone suggested I reach out and try to speak to people about their condition and to learn more about the treatment. My sister starts chemo on Monday, but we are trying to get her in for a second opinion at City of Hope. Any advice would be greatly appreciated!
  • Linda_OH
    Linda_OH Member Posts: 1
    #21
    uscsandrar said:

    My sister was just diagnosed with Rhabdomyosarcoma
    Hello. My sister was just diagnosed with Rhabdo and someone suggested I reach out and try to speak to people about their condition and to learn more about the treatment. My sister starts chemo on Monday, but we are trying to get her in for a second opinion at City of Hope. Any advice would be greatly appreciated!

    21 year old son with rhabdomyosarcoma
    I hope your sister is responding well to treatment. My 21 year old son was diagnosed with rhabdomyosarcoma in February 2008. The doctors have not always been clear but I believe his is embryonal. He underwent 6 rounds of chemo that were very difficult. A couple of months after chemo, the cancer showed on a CT scan so we were referred to another hospital. He has just completed 9 of the 12 cycles. He has had a much better quality of life during chemo this time; different drugs, different dosages, and different methods of coping. Additionally this time he will receive radiation. Good luck and best wishes to you and your sister.

Discussion Boards