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adult survivors of childhood cancer

charlottebug
Posts: 2
Joined: Oct 2008

Hello! I just recently joined the discussion boards, and I noticed that several threads I was planning to respond to were years old, and thought I'd just start a new one.

I am a 27 year old survivor of osteosarcoma, I was diagnosed at age 9 in 1991 and in remission a year later. I had a year of high-dose chemotherapy and a limb salvage operation where they removed the majority of the muscles around my knee as well as (of course) the knee itself, the thigh bone and most of the shin bones. I am currently learning and dealing with numerous long-term side effects and am eager to hear about other long-term survivors and how they're dealing with the effects of chemo.

If there's anybody on here who is dealing with pediatric cancer, either as a patient or a caregiver/parent, I'd be happy to talk with you. Just send me a message via the network. I currently live in Northern Illinois, and will be moving to Chicago next year. I was treated at the Children's Hospital in Milwaukee, and I still go there for my surgeries.

So - I'd love to just get a feel for how many of us are on here. If you can post a quick intro here, even if you already did one years ago, that would be really great. I don't want to bother somebody with a private message if they haven't posted in years, but like I said I'd love to meet other young adults with similar histories.

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi there Charlotte,
I am also a survivor of a pediatric cancer only mine was Neuroblastoma. I have side effects from treatments as well. If you'd like to talk sometime even if we don't share similar stories feel free to send me a message via the network if not thats ok too.

charlottebug
Posts: 2
Joined: Oct 2008

for some reason I wasn't able to send you a message via the network. if you go to my profile it's set up to receive messages from members. if that doesn't work, i'd be happy to post my email, but i thought i'd try this first. i'd love to talk sometime, it sounds like our stories aren't exactly the same but really i came on here looking for support from people who are experiencing long-term side effects of any kind, and i'm sure we'd find that we have a lot in common!

Aquagirl18
Posts: 45
Joined: Apr 2003

for anyone who would like to e-mail me about survivorship or if you just want to talk and get support from another cancer survivor you can e-mail me at cat2579@sbcglobal.net

styln06
Posts: 3
Joined: Jun 2015

I would love to chat with you!! Hope all is good with you!!  You can email me at TLLSTYLN@gmail.com.. He could really use a friend who has been through this. 

Thanks look forward to hearing from you

Chases mom.....Tammy 

btcat's picture
btcat
Posts: 58
Joined: Mar 2005

I'm Christy who started the survivors of childhood cancer thread. Although threads were started years ago doesn't mean they're not still active. Go ahead and enter them, read entries and respond as you like.
I am a 25 year survivor of medula blastoma. Probably not exactly what you would consider a young adult as I'm 36, but I feel like a young adult.
Feel free to check out the other threads in the message board. Check out the chat room too; it's great!

maryruth1035's picture
maryruth1035
Posts: 16
Joined: Mar 2009

Hi, I'm 51 this month. My cancer (neuroblastoma) was removed when I was 8 weeks old in 1958-- and then I was given a series of radiation treatments. I never had chemo--but have had a lot of subsequent 'wierd body syndrome' stuff (My husband and I call it WBS). A lot of the residual problems I have had are due to the radiation as a child.

But I've always tried to look on the bright side--I'm alive and I've lived a great 51 years--and I' in the part of my life where I have time and resources to do what I actually enjoy

--Maryruth

megordo
Posts: 1
Joined: Apr 2009

I just noticed your message. Not sure if you will even get this, but I had to write. I was diagnosed @ 15 years old in 1986. I also had a year of chemo as well as a limb salvage. It was in my right knee. I was treated at the City of Hope in Duarte California. It is an amazing place. I fell like I am suffering some affects of the chemo, even 23 years later. My bones ache so much, do you have this problem? It is to the point that I moved to Arizona hoping to get relief.

rutensar
Posts: 2
Joined: Dec 2007

I'm 22 years old now, and I'm a 19 year survivor hepatoblastoma. I was diagnosed at 15 months, treated with chemo and surgery, relasped twice, so more chemo and surgery, but have been disease free since March of 1990. My biggest long-term effects from chemo are profound hearing loss and kidney damage from cisplatin (which I only recently found out about). I would be more than happy to provide more detail if anyone wants it, but that's the brief overview. I'm still a bit new to this whole thing, so although I really want to talk about it all, I don't quite know how to...

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

I to am experiencing the late effects of chemo and radiation. I had radiation from my neck to my pelvis, back in the 1980's we got more than we should have, but they didn't know, they were more into the survival rates and they did save my life, they told my parents that I would probably die, that was 23 years ago. I have had alot of health problems, you can read the about me page if you like.

I am interested in talking to people like me, that are long term survivors experiencing the late effects. My e-mail address is bmrigney29@aol.com, if you know of any other sites or blogs, threads etc...

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styln06
Posts: 3
Joined: Jun 2015

Anyone out there who has had neuroblastoma as an infant!!!?? My son was diagnosed at 12 wks old in March of 1991. He had 2 PRIMARY NEUROBLASTOMA TUMORS!! He needs friends who can relate to what he has been through....In Dec 2013 at 23 years old he had a adenocarcinoma tumor in his colon. It was in EXACTLY  the same place where he had X-rays for 18 years to make sure his neuroblastoma tumor that had been on his adrenal gland connected to his left kidney was still gone. The radiation from the X-rays caused this LATE effect tumor. He had 3/4s of his colon removed did well through chemo and his small intestine was hooked back up to what colon he had left Nov 2014.  He is one tough dude!!! I wanted to reach out to the survivors out there on his behalf, I watch him struggle with physical pain and mental issues and as his mom I would love for him to have friends who are dealing with the struggles just like he is....I LOVE THIS KID AND HIS 19 YEAR OLD SISTER MORE THAN ANYTHING.....AS A MOM OF A CHILD WHO HAD NEUROBLASTOMA AS A BABY I FEEL BLESSED BEYOND WORDS.....I HAVE SEVERE PTSD FROM GOING THROUGH THIS TRAUMA AS A HELPLESS MOM WATCHING HER CHILD FIGHT FOR HIS LIFE. THE LATE EFFECT TUMOR FROM THE XRAYS JUST ABOUT PUT ME IN THE GROUND, BUT I HAD TO BE STRONG FOR HIM.  HE IS CANCER FREE AND DOING WELL. AS FOR ME I AM A WALKING PTSD HOT MESS.....ANY PARENTS OUT THERE WHO HAS PTSD FROM GOING THROUGH HAVING A CHILD WHO HAD CANCER AS A INFANT I WOULD LOVE AND APPRECIATE TALKING TO YOU.....I AM STRUGGLING EXTREMELY BAD WITH PTSD AND NEED SUGGESTIONS ON WHAT I DO NOW. 

THANKS TO ALL

CHASE'S MOM......TAMMY IN INDIANA

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