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Rhabdomyosarcoma Survivors

angel813's picture
angel813
Posts: 6
Joined: Jan 2002

I am particulary interested in finding those who have survived rhabdo since the 70's or before. Thank You..northstar1@core.com

rhabdogal05
Posts: 2
Joined: Aug 2003

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
Posts: 1
Joined: Oct 2003

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
Posts: 1563
Joined: May 2006

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
Posts: 1563
Joined: May 2006

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

Phil22
Posts: 7
Joined: Nov 2012

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!

spyttfyre7
Posts: 1
Joined: Aug 2004

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
Posts: 2
Joined: Dec 2004

My 20 year old son is currently undergoing treatment for rhabdomyosarcoma

faulksmom
Posts: 2
Joined: Aug 2005

hello please tell me how your son is, my 19 year old son just got rhabdo also

amiec
Posts: 1
Joined: Jul 2005

I was diagnosed with rhabdo in April of 1978. I was 5 years old.

anamazon
Posts: 1
Joined: Dec 2007

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

emmabeansmom
Posts: 3
Joined: Nov 2011

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
Posts: 1
Joined: Dec 2011

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

Mobjack's picture
Mobjack
Posts: 6
Joined: Jun 2013

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...)

BIGHEDMICK
Posts: 4
Joined: Jan 2014

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.

strongT19
Posts: 4
Joined: Mar 2011

sorry not that old. but im a survivor with effects from the tumor though.

Ginachan's picture
Ginachan
Posts: 4
Joined: Mar 2011

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!

ToniRP
Posts: 1
Joined: Nov 2012

I am a survivor from the 1970's. I was diagnosed in 1875 at the age of 11.

Mallard97's picture
Mallard97
Posts: 1
Joined: Nov 2013

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's picture
Mobjack
Posts: 6
Joined: Jun 2013

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.

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