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Neuroblastoma
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Dec 11, 2008 - 9:55 pm
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. |
Joined: Jan 2009
My son is 2 months old and he just got diagosed with neuroblastoma. They have to do some more test to see what stage he is in.
Joined: Jan 2009
My three month old cousin was just diagnosed with Neuroblastoma too. They just did an open liver biopsy today and are waiting to see what a test result says to see what stage she is in too.
I hope that everything goes well for you. I know how hard it is for me, and can only imagine how hard it would be to be the mother in this situation. Good luck, and all children with this cancer are in my prayers.
Joined: Mar 2009
Hi all--I was diagnosed with a neuroblastoma in my abdomen at age 8 weeks, BACK IN 1958! Doing the math, that makes me just past 51. So I'm about 51 years post cancer--yeah! But I'm curious because I hear people talking about 'stages' and back in the day, when I was diagnosed, the Doctors in So.CA. didn't know of ANY other childhood survivors, let alone talk about 'stages'. (Althoug one person wrote in and said his brother was diagnosed in '53, which means he gets the 'oldest survivor yet' prize for the disease).
Although I don't know what the stages mean, I can tell you that mine was in my abdomen and at that time the doctors believed it had 'just started attaching itself to my spine..." Anyway, the good news is that I grew up strong and healthy, like other kids. I did have some bladder problems, and I often wonder if I wasn't an undiagnosed ADHD, but none-the-less, I excelled in sports and in academics, and ended up getting my Ph.D. in psychology. I have lived a rich & full life, have raised 4 kids (who we adopted due to my early menopause and inability to have our own), have climed 13 'fourteeners' (14,000+ foot elevation peaks in Colorado) and, when younger, biked 5 summers in a row about 100 miles per week, culminating in 300-400 mile tours throughout Colorado high country passes. I couldn't ask for a better life!
I have had 2 subsequent tumors (bignign)removed from my lower back--but those are apparently because of the radiation treatments I got in '58. (Back then they didn't know not to irradiate a neuroblastoma) So--CHildren can ad do survive this thing!
I pray that both of your children will grow up to be evn stronger and brighter than I!
--Maryruth
Joined: Jun 2009
My parents told me I am the oldest survivor of neuroblastoma. Supposedly my operation is in a medical journal.
My doctor, Dr. Everett Koop of Children's Hosptial was later the Surgeon General under President Reagan. I visited him in Washington DC as an adult. He was very glad to see me. I asked him a few questions (because my parents are deceased), but he was busy and this was 25 years later. I was very glad he remembered me.
BS
Joined: Sep 2009
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
Joined: Sep 2009
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
Joined: Sep 2009
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
Joined: Jul 2009
Hi there, I was diagnosed with Neuroblstoma at age 3, I'm now 26. The only other person I know personally that is a cancer survivor is my mother, she was diagnosed with breast cancer... for a second time in 07. But it's not easy to talk to her given that we had very different experiences and obviously her treatments were more up to date.
Joined: Sep 2009
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!
Joined: Sep 2009
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
Joined: Jul 2009
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.
Joined: Jul 2009
I was diagnosed with NB in 1968 operated on in Great Ormond st Hospital London in 1969, aged 6yrs
Joined: Sep 2009
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
Joined: Sep 2009
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
Joined: Aug 2009
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.
Joined: Sep 2009
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
Joined: Sep 2009
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"
Joined: Aug 2009
Joined: Oct 2010
I am a 45 year suvivor and I want to find out how many more uf "us" there are out..
Joined: Jan 2012
Did you have chemo and radiation back then, and any health issue?
Joined: Feb 2012
My son had Neuroblastoma, stage 4 at 2 mos. old. He had Hodgkins at age 28. He is now 40. I write today looking for information from any survivors who have had a high PSA, high cholesteral, and low testosterone. Regular Dr.'s don't seem to know what to do with survivors, and cancer Dr.s seem to know only what to do with cancer patients. Is there anyone out there who specializes in cancer survivors?
Joined: Feb 2012
I haven't meant anyone that has had my cancer most childern i heard about in my area that had neuroblastoma did not make it (people who were close to my age). however i did a lot treatment at the time were not genraly use for cancer treatment need to say if childerns didnt do so and my parent didnt sign off on every single paper i probably wouldnt be here. i am now 23 years old had some side effect from the treatment but nothing i cant live with. so the same to anyone who question or to parents who just need hope i would be happy to anwser any question.
Joined: May 2012
Your survivor story from two times of neuroblastoma stage 4 is very encouraging and what type of treatment you have and where? My grandson was diagnosed with neuroblastoma stage 4 at the end of Feb and now is undergoing chemo in Miami. We are constantly searching successful stories to inspire us as we heard so many sad stories.
Best wishes,
Joined: Mar 2012
Hello! I am a survivor of neuroblastoma as well.. I would love to talk to you about it sometime. I have never met any survivors before either, and am curious to know about your treatments, late term effects, etc. Let me know if you are interested in talking! Praise God we are both here! :)
Joined: May 2012
Hi All!
I was really excited to see so many survivors of Neuroblastoma. I have not met any other survivors of the same cancer that I had and it is exciting to see so many out there. I was diagnosed at the age of six (1991), which is rather late in Neuroblastoma land. I had chemotherapy, radiation, and a bone marrow transplant. I remember most of the treatment, so I am now, as an adult, dealing with many residual emotions from the treatment. I am in a long-term follow up program and they have been running a lot of tests for heart, lungs, kidneys, and hearing just to name a few since my doctors have seen problems in these areas before in other patients. I have minor hearing loss, from chemotherapy, but my heart, kidneys, and lungs all look good. I am 27 and I have osteoporosis and cataracts from the radiation I received. I have had some trouble with producing estrogen as well. Most of my side effects have to do with the heavy doses of radiation I received. I am grateful to be alive though and the side effects can be dealt with using medication. Are there any survivors in the Los Angeles/Orange County Areas of California?
Joined: May 2012
Hi, there. My grandson was diagnosed with neuroblastoma stage 4 at end of Feb. 2012 at age of 3 1/2 years old. He is now undergoing chemo therapy in Miami children hospital. We are constantly searching for survivors. I am very encouraged and excited to know you are one of the survivors from this terrible disease. If I visit Orange county where a very close friend of mine lives next time and I will like to meet you.
Joined: Apr 2013
How is your Grandson now? my nephew was dignosed yesterday and i just joined this network. I wish him well.
Joined: Jan 2013
My sister was diagnised with Neuroblastoma last May - She is 51. Anone here that was diagnosed with this type of cancer as an adult? Anyone know of any good cancer centers, new treatments,...? She went through heavy chemo and radiation and the doctors are not seeing any results. Need any help/suggestions I can get. I know it is rare for an adult to have this thing. Many thanks.
Joined: Apr 2013
Hi all
My Nephew Alexander, who we call him Astro Boy was diagnosed with Neuroblastoma yesterday and we are devastated. He is only 13 month old. We still do not know what stage he has but it is possible that it already metastasized to different areas of the body. I wanted to know what is the chance of survival, and chance of cancer to come back. All the input will