Rhabdomyosarcoma Survivors

angel813
angel813 Member Posts: 6 Member
edited November 2022 in Sarcoma #1
I am particulary interested in finding those who have survived rhabdo since the 70's or before. Thank You..northstar1@core.com
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Comments

  • rhabdogal05
    rhabdogal05 Member Posts: 2
    #2
    Hi my name is Jessica and I may be a help to you or not. I have most certainly not been a survivor of rhabdo since the 70's or earlier because I am only 16. But I have been a survivor for 10, almost 11 years. I was diagnosed in 1992 when I was only 5 1/2. Ever since, I have been a survivor. You are free to email me. I too am kind of interested in finding rhabdo survivors becasue I know how rare rhabdomyosarcoma is.
    -airesgal787@aol.com
  • corpokid
    corpokid Member Posts: 1
    #3
    rhabdogal05 said:

    Hi my name is Jessica and I may be a help to you or not. I have most certainly not been a survivor of rhabdo since the 70's or earlier because I am only 16. But I have been a survivor for 10, almost 11 years. I was diagnosed in 1992 when I was only 5 1/2. Ever since, I have been a survivor. You are free to email me. I too am kind of interested in finding rhabdo survivors becasue I know how rare rhabdomyosarcoma is.
    -airesgal787@aol.com

    Hi Jessica:
    My name is Juan Sanchez.
    My nephew Cesar was just diagnosed with Rhabdomyosarcoma. He is 12 years old. When he was told by a social worker what he had he got desperate and inconsolable. This is so hard for all of us.
    He doesn't have internet access at the hospital. But I would like to hear your story so I can
    print it and give it to him. I would also like him to get in contact with you as soon as he gets out the hospital.
    I signed up with an alternate email address. My regular email is jc-sanchez@comcast.net
    Thanks and god bless you.
    Juan Sanchez
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #4
    rhabdogal05 said:

    Hi my name is Jessica and I may be a help to you or not. I have most certainly not been a survivor of rhabdo since the 70's or earlier because I am only 16. But I have been a survivor for 10, almost 11 years. I was diagnosed in 1992 when I was only 5 1/2. Ever since, I have been a survivor. You are free to email me. I too am kind of interested in finding rhabdo survivors becasue I know how rare rhabdomyosarcoma is.
    -airesgal787@aol.com

    Hi Jessica,

    My name is Sungchan choi and I want to get your help if you can. What type of rhabdomyosarcoma did you have and in which part of your body?
    Could you e-mail me to below address?

    csc@innowireless.co.kr

    Thanks in advance!!!

    Regards, Sungchan.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #5
    AuthorUnknown said:

    Hi Jessica,

    My name is Sungchan choi and I want to get your help if you can. What type of rhabdomyosarcoma did you have and in which part of your body?
    Could you e-mail me to below address?

    csc@innowireless.co.kr

    Thanks in advance!!!

    Regards, Sungchan.

    Hi all,

    My 3 and half year old son get embryonal rhabdomyosarcoma in the bladder. Is there any body who has knowledge on this and can help me in getting some advice?

    Thanks in advance!!!

    BR/CSC
  • spyttfyre7
    spyttfyre7 Member Posts: 1
    #6
    I am a survivor that was diagnosed in 84>??? i know its not 70's or before, but now i am 24, was 4 when it happened.. if that would help at all
  • sar899
    sar899 Member Posts: 2
    #7
    My 20 year old son is currently undergoing treatment for rhabdomyosarcoma
  • amiec
    amiec Member Posts: 1
    #8
    I was diagnosed with rhabdo in April of 1978. I was 5 years old.
  • faulksmom
    faulksmom Member Posts: 2
    #9
    sar899 said:

    My 20 year old son is currently undergoing treatment for rhabdomyosarcoma

    hello please tell me how your son is, my 19 year old son just got rhabdo also
  • anamazon
    anamazon Member Posts: 1
    #10
    Hi, My name is Stephanie and I was diagnosed in 1978. I was only 8 weeks old at the time. The cancer was in my bladder and surrounding lymph nodes. I was treated at Primary Childrens Hospital in Utah. I had several surgeries and rounds of chemo and then I became the first child to ever be given a radioactive implant for three days. Now I don't know if I was the first child anywhere to have had this or whether I was just the first at that hospital. I went into remission at the age of 3. I've stayed in remission ever since but have had a slew of various other illnesses that were either related or caused by the treatment that saved my life. Feel free to message me if you'd like to know more or just for some support
  • strongT19
    strongT19 Member Posts: 4
    #11
    uhm..
    sorry not that old. but im a survivor with effects from the tumor though.
  • Ginachan
    Ginachan Member Posts: 4
    #12
    I'm a ARMS survivor! I was
    I'm a ARMS survivor! I was first diagnosed in 2003 at the age of nineteen. I had a reocurrace in 2008 at the age of 24. It's tuff stuff, especially since it's a rare disease with it's own set of complications. We are a special group of people! At least, that's what I like to blieve!
  • emmabeansmom
    emmabeansmom Member Posts: 3 Member
    #13
    anamazon said:

    Hi, My name is Stephanie and I was diagnosed in 1978. I was only 8 weeks old at the time. The cancer was in my bladder and surrounding lymph nodes. I was treated at Primary Childrens Hospital in Utah. I had several surgeries and rounds of chemo and then I became the first child to ever be given a radioactive implant for three days. Now I don't know if I was the first child anywhere to have had this or whether I was just the first at that hospital. I went into remission at the age of 3. I've stayed in remission ever since but have had a slew of various other illnesses that were either related or caused by the treatment that saved my life. Feel free to message me if you'd like to know more or just for some support

    hi.. my daughter was treated
    hi.. my daughter was treated for rabdo in the bladder/uterus area.. she is 5 yrs out and cancer free but we are dealing with so many freaking other issues due to treatment.. did you ahve radiation? did you have any issues with puberty? having kids? fertility? bone growth? Emma has had screw put in her femurs to keep the balls from slipping of their growth plates.. and we are afraid of her egg count. heading to endocronologist at the end of the month.. hope her hormones are ok. but expecting some issues.. any light you can shed would help.. XO bless you..w
  • sarah_86
    sarah_86 Member Posts: 1
    #14
    emmabeansmom said:

    hi.. my daughter was treated
    hi.. my daughter was treated for rabdo in the bladder/uterus area.. she is 5 yrs out and cancer free but we are dealing with so many freaking other issues due to treatment.. did you ahve radiation? did you have any issues with puberty? having kids? fertility? bone growth? Emma has had screw put in her femurs to keep the balls from slipping of their growth plates.. and we are afraid of her egg count. heading to endocronologist at the end of the month.. hope her hormones are ok. but expecting some issues.. any light you can shed would help.. XO bless you..w

    Long Term Follow up

    Hi Emma's mum :) I'm not sure I can provide much insight as although I had RMS (embryonal) it was in my neck (diagnosed 1992 when I was 6 years old). I did however have radiation and have therefore been closely monitored for similar issues to your daughter so I'm happy to chat with you to see if I can help in any way. Feel free to email me on

    sarahkie_smiles@hotmail.co.uk.

    How did Emma's endocrinology appointment go?

    Hang on in there...it isn't always easy having to wade through all the late effects...but there's lots of us to wade with you :)

    Regards

    Sarah
  • Phil22
    Phil22 Member Posts: 7
    #15
    AuthorUnknown said:

    Hi Jessica,

    My name is Sungchan choi and I want to get your help if you can. What type of rhabdomyosarcoma did you have and in which part of your body?
    Could you e-mail me to below address?

    csc@innowireless.co.kr

    Thanks in advance!!!

    Regards, Sungchan.

    Rhabdomyosarcoma
    My grandson this cancer in his arm he's been in treatment for the last two years, today they told him that it slowed down but they do not give him a year to live please if anyone has had success in fighting this awful cancer please tell me where and how!
  • ToniRP
    ToniRP Member Posts: 1
    #16
    I am a survivor from the
    I am a survivor from the 1970's. I was diagnosed in 1875 at the age of 11.
  • Mallard97
    Mallard97 Member Posts: 1
    #17
    Rhabdomayosarcoma survivor

    Hi, 

    My name is William Cozzens. I am 39 years old. I am a rhabdomyosarcoma cancer survivor. I was diagnosed when I was one years old. I believe that I had treatments till I was five years old. I was diagnosed in 1975 and it came back in 1976. I had had radiation and chemotherapy. It was in the soft pallet of the nasal pharonix. As a result of the treatments I have stunted growth in the face and other parts of my body. However, I am happy to be alive. Feel free to contact me. I have never met or talked with any survivors any age or close who had this disease. William.cozzens@yahoo.com

  • Mobjack
    Mobjack Member Posts: 10
    #18
    anamazon said:

    Hi, My name is Stephanie and I was diagnosed in 1978. I was only 8 weeks old at the time. The cancer was in my bladder and surrounding lymph nodes. I was treated at Primary Childrens Hospital in Utah. I had several surgeries and rounds of chemo and then I became the first child to ever be given a radioactive implant for three days. Now I don't know if I was the first child anywhere to have had this or whether I was just the first at that hospital. I went into remission at the age of 3. I've stayed in remission ever since but have had a slew of various other illnesses that were either related or caused by the treatment that saved my life. Feel free to message me if you'd like to know more or just for some support

    Illnesses brought on by treatment

    Hello anamazon,

    I realize I'm replying to a very old post, and you may never see this, but I'm gonna give it a shot.  I was diagnosed in '74, and the cancer was in the same area as yours. I've had a few sporadic problems over the years, but now, at age 51, those problems have become so frequent and severe, that I have had to stop working.  I'd be very interested to know what kinds of problems other survivors are experiencing, and perhaps swap stories of things we have each found helpful.  This site is a bit confusing to me, as it seems to be all over the place, and for the short time that I have been using this site, no one has ever responded to me replies or posts.  So I don't even know if my requests are going through.  If there is any staffer reading this, please advise. Thanks. 

    (I think I may repost this on a more general board...)

  • Mobjack
    Mobjack Member Posts: 10
    #19
    Mallard97 said:

    Rhabdomayosarcoma survivor

    Hi, 

    My name is William Cozzens. I am 39 years old. I am a rhabdomyosarcoma cancer survivor. I was diagnosed when I was one years old. I believe that I had treatments till I was five years old. I was diagnosed in 1975 and it came back in 1976. I had had radiation and chemotherapy. It was in the soft pallet of the nasal pharonix. As a result of the treatments I have stunted growth in the face and other parts of my body. However, I am happy to be alive. Feel free to contact me. I have never met or talked with any survivors any age or close who had this disease. William.cozzens@yahoo.com

    Living with the consequences of treatment

    I was diagnosed in '74, although the cancer was not in the same area as yours. I've had a few sporadic problems over the years, but now, at age 51, those problems have become so frequent and severe, that I have had to stop working.  I'd be very interested to know what kinds of problems other survivors are experiencing, and perhaps swap stories of things we have each found helpful.  This site is a bit confusing to me, as it seems to be all over the place, and for the short time that I have been using this site, no one has ever responded to my replies or posts.  I will shoot you an email, as your post is about the most recent I can find.

  • BIGHEDMICK
    BIGHEDMICK Member Posts: 4
    #20
    Mobjack said:

    Illnesses brought on by treatment

    Hello anamazon,

    I realize I'm replying to a very old post, and you may never see this, but I'm gonna give it a shot.  I was diagnosed in '74, and the cancer was in the same area as yours. I've had a few sporadic problems over the years, but now, at age 51, those problems have become so frequent and severe, that I have had to stop working.  I'd be very interested to know what kinds of problems other survivors are experiencing, and perhaps swap stories of things we have each found helpful.  This site is a bit confusing to me, as it seems to be all over the place, and for the short time that I have been using this site, no one has ever responded to me replies or posts.  So I don't even know if my requests are going through.  If there is any staffer reading this, please advise. Thanks. 

    (I think I may repost this on a more general board...)

    Son with rhabdo, learning about late affects....

    Just wanted to say, I read your post. I agree this site needs some kind of maintenance or webmaster. Can't help with your particular question, but maybe you can help me. Where was your tumor located? Trying to find out any possible late affects of the cancer from anybody and everybody. If you don't mind of course. Thank you sir.

  • Heather Ford
    Heather Ford Member Posts: 3
    #21
    Mobjack said:

    Living with the consequences of treatment

    I was diagnosed in '74, although the cancer was not in the same area as yours. I've had a few sporadic problems over the years, but now, at age 51, those problems have become so frequent and severe, that I have had to stop working.  I'd be very interested to know what kinds of problems other survivors are experiencing, and perhaps swap stories of things we have each found helpful.  This site is a bit confusing to me, as it seems to be all over the place, and for the short time that I have been using this site, no one has ever responded to my replies or posts.  I will shoot you an email, as your post is about the most recent I can find.

    Rhabdomyosarcoma of sternocleidomastoid muscle in neck

    I realize your post is 2 years old, but I am a long term survivor like you.  My rhabdomyosarcoma tumor was located in my neck and found at age 8 weeks back in 1973.  I am running into some problems now related to my surgery (they had to remove the entire sternocleidomastoid muscle on one side of my neck, which is causing me to have a fair amount of pain now as I start to age), combined with a lot of muscle atrophy in the areas where I had radiation.  I have found that with regular weight lifting that I am able to regain some of the atrophied muscle, but within 3-4 days of missing a workout I rapidly lose muscle mass again.  I have resigned myself to having to work out at least every other day to stay pain free, but I suppose there are worse activities I could have to do!  At least it keeps the rest of me in shape!

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