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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: 51
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...

TCD_ALL_NJ
Posts: 3
Joined: Sep 2015

Hello I'm not sure if you are still active since 2009?Anyway I hope your health is good.

I had ALL when I was age 6 and I am 53 year old man now. I had cobalt cranial and spinal radiation and I had late effects as early as when I was in my early 20's

My problems unfortunately have been getting worse the last 7 years or so. Cognitive problems(Working short term memory/Executive Functions) and dealing with emotional frustration are my worst problems. I also probably have some bipolar issues, definitely anxiety/depression. The last year and a half I have been experienced dementia like symptoms. My mom's mom had Alzheimers. People who didn't have cranial radiation generally can hope for better quality of life but it is still very difficult with jobs and finances etc.

You probably were treated with newer chemo drugs so hopefully your health will be better. I haven't been active on this site but I want to change that. I want to learn and encourage other survivors to try to stay positive and manage their health as best as possible. I do have a basic twitter account and I would like to see more awareness for survivors with late term problems. We should be able to get some more help financially to help with our problems. On our taxes (a credit), via disability or some kind of supplemental payment. I am grateful for being alive but I need real help for the rest of my life.

My first name is Thomas. Take Care. Welcome to send a message or anyone else. Peace. God Bless. TCD777@yahoo.com

 

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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

jnickele's picture
jnickele
Posts: 5
Joined: Apr 2018

Hi Tammy,

I have experience with a free peer-to-peer cancer support network that does exactly what you're looking for. It's called Imerman Angels and based on very detailed criteria, they match both patients and caregivers with 'Mentor Angels' who have endured very similar circumstances (same cancer/stage/treatments/side effects/family situation/financials/age/etc.).

I was diagnosed with PTSD after losing my mother to cancer when I was 19 and I actually requested a Mentor Angel from this organization. She is also the daughter of a mother who had the same type of cancer, similar treatments, and my mentor was, like me, tying to juggle being 19 and college responsibilities when she went through this. Her help and words of encouragement and honesty have been invaluable to me. She has helped hold me together on many of the days where I wanted to fall apart because she had perspective that no one else did. 

If you want, Imerman Angels could pair you with someone who has been in a very similar situation that you could talk to as much or as little as you want. It's an incredible thing to connect with someone who understand your situation far more than anyone else can. I have found hope and solace and I hope that this offers the same opportunity for you. 

Your son could also speak to a survivor Mentor Angel. The organization was founded by Jonny Imerman who had testicular cancer at 26 and wanted someone his age with the same cancer and similar treatments to talk to, so he started this so that no one has to face the experience of cancer and the aftermath alone.

Here is the link to request support: https://imermanangels.org/get-support/

I wish you the absolute best. You are an amazing mother and your son is lucky to have you. If you want to ask me any more questions about Imerman Angels and my experience with them, you can call me at (224) 392 8784 or email jnickele@umich.edu!

Best,

Julie

jnickele's picture
jnickele
Posts: 5
Joined: Apr 2018

Please read my comment on styln06 as well, but after reading this page I am so inspired by all of you. The organization I mentioned in the other comments, Imerman Angels, offers free peer-to-peer cancer support.

There are a lot of children who need mentors and really want to relate, so if anyone here is interested, I also became a Mentor Angel so I know that process as well. All of you seem like absolutely beautiful people that any child would be lucky to speak to while going through similar cancer journeys to your own. It's so important for kids to see that there are survivors and that there can be life and happiness after cancer even though it's a struggle.

There was one Mentor Angel story where a 9 year old girl never thought she'd be able to dance again after being diagnosed with AML. She got connected to a Mentor Angel who had been a dancer pre-diagnosis, got diagnosed with AML at the same age, beat it and went on to pursue dancing. This little 9 year old girl now believes that she has a chance of dancing again - and she deserves that hope.

If any of you are intrested, here's more info for becoming a Mentor Angel: https://imermanangels.org/give-support/

It's been really healing to me to mentor someone else, so I just thought of this organization as I read through this page and wanted to share!

Best,

Julie

kevinposton's picture
kevinposton
Posts: 4
Joined: Aug 2018

Do any other childhood brain cancer survivors feel that they have been depressed their whole life? I feel I would never know the difference between being depressed and not. I have been there so long, and after 25 years it seems even worse now than ever. Does any other survivors feel the same? 

TCD_ALL_NJ
Posts: 3
Joined: Sep 2015

I can definitely empathize. I have felt a constant sense of anxiety/depression my whole life. I have no other life experience to compare it to.

I do feel damaged and kind of like a freak and it is a challenge to think positive many days. I know many other people have serious problems in this life that I haven't had to endure so I try not to dwell on and it and feel sorry for myself but I am guilty of that sometimes. Survivors Guilt maybe. Definitely makes me more empathetic and philosophical about the meaning of life in general and my life in particular.

Take Care. God Bless

Meg_E_125
Posts: 4
Joined: Jan 2020

After 27 years, I have had bouts of depression that are definitely related to having gone through what I had when I was younger. I try my hardest to be so thankful for what I have, but I find myself often falling to depression over the fact that I feel like I can't be fully understood, because no one that I know has been in my particular position. Another thing I get somewhat depressed about is the difficulties that I have. I now have coordination problems, and I constantly shake. I get so frustrated having difficulty doing something that is so easy for someone else to do.  Mind you, I do know that there are others that have it so much worse physically than I do. I know that I am very lucky.

kevinposton's picture
kevinposton
Posts: 4
Joined: Aug 2018

I was diagnosed in 1992 with Ependymoma brain cancer. 12 hour surgery and 6 weeks of high dose whole head radiation. Part of right cerebrum removed. At the moment I am 37. 25 year survivor! I am from North Alabama.

survivor88's picture
survivor88
Posts: 2
Joined: May 2019

I am a 31year cancer survivor of stage 4 CML. I don't remember any of it though so I won't be much help. I can discuss longterm effects of childhood cancer. Anyone who has similar background please contact. Thanks. Survivor88

Meg_E_125
Posts: 4
Joined: Jan 2020

Hi! My name is Meghan, and I am a 26 year survivor of a stage 4 malignant astrocytoma located in my cerebellum. A year after my innecial diagnosis and surgery, my tumor reoccurred. With my second surgery I lost many abilities like walking, talking, and writing. I didn't loose any cognitive ability though. I have since, through lots of therapy, regained most of the skills that I lost. I have never met anyone who had an experience like mine.

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