Cancer Survivors Network - Neuroblastoma - Comments

My son

turbozak — Wed, 18 Jan 2012 19:14:58 -0500

Did you have chemo and radiation back then, and any health issue?

NEUROBLASTOMA DIAGNOSTED IN 1965

indiareynolds — Wed, 20 Oct 2010 21:57:47 -0400

I am a 45 year suvivor and I want to find out how many more uf "us" there are out..

jillebob — Wed, 11 Nov 2009 22:40:35 -0500

spinal neuroblastoma surviver

jamietice — Wed, 30 Sep 2009 14:25:48 -0400

Hi,
my name is jamie tice.i am a spinal neuroblastoma surviver. i was born in 1974 and diagnosed at the age of 1.5 after a colapse due to the tumer suficating my lower spine. i recived kemo,surgery,radiation and was still told that i would never walk.well i did after a few years ! i have always had back pain and did have bowel and kiddny problems. i raced bikes,played football,kick boxing,muay tie and am strangly muscular for not working out. i do still walk on my tippy toes when im not wearing shoes. last year i actualy found a local doctor who determind were my constant back pain has been coming from...due to the radiation i developed a spinal degenerative bone disorder and have been told that in a matter of 5 to 8 years i will once again loose the abillity to walk..yes it sucks but the time ive had compared to the time i could have not had was worth it. the pain in my back has been consitant since the surgery.. the only thing over the years i found to aliviate some of the pain (belive it or not) was marijuana yes who ever reads this and does not belive me so be it.."im not lieing and im not a stoner" ive had every pain killer in the world and no luck..allthough there are more times than none that it doesnt help it will still be the only thing that has.also i lost the ability to reproduce,i came across a report witch states that durring the surgerys they some times remove the limpnodes witch have something to do with reproduction.ive even come across reports of mental problems as well.i never gave up and i hope that any one else in this situation doesnt either. good luck to all of you and remember how ever bad it is it could have been a whole lot worse !!! JAMIE TICE "35 and still going,even after i go down again i will not stop untill my last breath"

No, sorry I can't say that

StarMunchkin — Fri, 18 Sep 2009 11:39:33 -0400

No, sorry I can't say that was me. I live in Upstate NY. My cancer was discovered when a family member saw a lump in my neck which turned out to be a tumor. I'm not sure what exact treatment I was given but I do know I was given chemo and radiation treatment.

Hi there

lackiet — Mon, 07 Sep 2009 14:32:35 -0400

Hi Maryruth,
My name is Tory Lackie and i was diagnosed with neuroblastoma when i was three yrs old. I am 26 now and live in vail colorado. I read your post and would presume that you live in colorado as well. I saw that you are a survivor with much more years than I and I just wanted to say that I am glad to see that. I would love to talk to you a little more and just see how things have been for you. My email is torylackie@gmail.com if you want to email. Hope all is well and would love to hear from you. Thank you Tory

Question

lackiet — Mon, 07 Sep 2009 14:31:27 -0400

Is your name erin, my mom was telling me about a girl named erin who was at the same hospital that I took the room over from. I was at the mattel children's hospital @ucla back in 1986/87. I was wondering if you were that person because my mom had been under the impression that they had passed away. I certainly hope not an hope you are this person. that would be great. Well, I hope to hear back! take care, Tory lackie

Neuroblastoma

lackiet — Sun, 06 Sep 2009 20:41:17 -0400

Hi there, my name is Tory Lackie and i was diagnosed at the age of three with stage 3 neuroblastoma and am now 26. I live in colorado but am from michigan. I had my treatment at the mattel children's hospital in Los Angeles. I would love to talk with you more and hope you are still doing well. My email is torylackie@gmail.com Thanks for you time and hope to hear from you soon. Take care
from torylackie

Neuroblastoma

lackiet — Sun, 06 Sep 2009 20:41:12 -0400

Neuroblastoma

lackiet — Sun, 06 Sep 2009 20:27:42 -0400

Hi there, my name is tory lackie and i had neuroblastoma when I was 3 years old and am now 26 years old. I think it is so great to read this about your older diagnosis of Neuroblastoma. I hope everything is going great with you and your family. I would very much like to talk more with you and learn more myself. I live in colorado now and am from michigan. My treatment was very different than most. I would love to hear from you and/or your family, to talk more. My email is torylackie@gmail.com
Take care and thanks so much from torylackie

Neuroblastoma

lackiet — Sun, 06 Sep 2009 20:18:42 -0400

Hi there I am a survivor of neuroblastoma with 23 years. My name is Tory Lackie and live in colorado. I was 3 years old when i was diagnosed with stage 3 neuroblastoma. I am 26 years old now and living my life to the fullest. I would love to talk more with you and learn a little bit more about yourself and how things are with you. I hope to hear from you and that things are great with you. My email is torylackie@gmail.com take care and thanks from torylackie

Neuroblastoma

lackiet — Sun, 06 Sep 2009 20:14:27 -0400

Hi there, I am very curious about you for the fact that I am also 26 years old and was diagnosed when I was 3 years old. This is such a strange coincidence and I would love to talk to you more. My name is Tory Lackie and was treated at the mattel childrens hospital @ UCLA. I would appreciate learning more about you and your treatments. Like where are you from and how did you find out. I hope your doing well and everything is well. My email is torylackie@gmail.com I hope to hear from you. Take Care thank you from torylackie!

Neuroblastoma

lackiet — Sun, 06 Sep 2009 20:05:33 -0400

Survivor from 1969

jillebob — Mon, 10 Aug 2009 20:24:12 -0400

Just thought I would let you know that I am a survivor. I was born in 1969 and diagnosed that same year. By age two I was in remission to my knowledge. I have had chemotherapy and surgery. My cancer wasd by my left shoulder blade, I have a scar following my shoulder blade down to my breast. I am now 40 years old.

long term survival

hulabaloo — Tue, 28 Jul 2009 08:43:22 -0400

I was diagnosed with NB in 1968 operated on in Great Ormond st Hospital London in 1969, aged 6yrs

Neuroblastoma

Aquagirl18 — Thu, 11 Dec 2008 21:55:27 -0500

Is anyone here a survivor of Neuroblastoma? I was diagosed with it at a very young age and up until a few years ago I didn't really know any cancer survivors and I have only met one other person who had neuroblastoma as a child only she didn't have the same treatments etc. I thought I would post to offer my support and friendship to anyone who has had a childhood cancer and those who are currently caregivers to children with Neuroblastoma. Please feel free to leave me a message here if you have anything you'd like to know and if you've had experience with a childhood cancer. I feel very fortunate and blessed to be alive and I have made it one of my goals to be an advocate for cancer surviorship and childhood cancer awareness.