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Neuroblastoma

Aquagirl18
Posts: 45
Joined: Apr 2003

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.

Alexander11's picture
Alexander11
Posts: 2
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.

lilsaullie89
Posts: 1
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.

maryruth1035's picture
maryruth1035
Posts: 16
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

My year 1952
Posts: 3
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

lackiet's picture
lackiet
Posts: 9
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

lackiet's picture
lackiet
Posts: 9
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

lackiet's picture
lackiet
Posts: 9
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

StarMunchkin's picture
StarMunchkin
Posts: 4
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.

lackiet's picture
lackiet
Posts: 9
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!

lackiet's picture
lackiet
Posts: 9
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

StarMunchkin's picture
StarMunchkin
Posts: 4
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.

hulabaloo
Posts: 1
Joined: Jul 2009

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

lackiet's picture
lackiet
Posts: 9
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

lackiet's picture
lackiet
Posts: 9
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

jillebob
Posts: 12
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.

lackiet's picture
lackiet
Posts: 9
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

jamietice
Posts: 1
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"

jillebob
Posts: 12
Joined: Aug 2009
indiareynolds
Posts: 2
Joined: Oct 2010

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

turbozak
Posts: 1
Joined: Jan 2012

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

Mom1
Posts: 1
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?

chefjade13
Posts: 1
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.

benwenli
Posts: 2
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,

joyinmyheart
Posts: 1
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! :)

kroberts4
Posts: 2
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?

benwenli
Posts: 2
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.

AstroBoy
Posts: 2
Joined: Apr 2013

How is your Grandson now? my nephew was dignosed yesterday and i just joined this network. I wish him well.

formysis
Posts: 1
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.

 

AstroBoy
Posts: 2
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 be appreciated, I am also reading everyone’s posts and it looks like you are a fighter and it gives me a hope. Please let me know what could be possible long term effects.

 

crs
Posts: 1
Joined: May 2013

take it it as it comes. What have yall been told so far? My son Wes was just days away from his 1st birthday when we got the shock our lives. neuroblastic cells were gound on a CT of his neck. We noticed that his neck didnt look prportional. i work for his pedi. he thought we should have a Ct. Valentines day we had the ct.We were told to go back to tx childrens because they found a calcification on the image. we biopsied the following day. He underwent mibg, ct with contrast, bone marrow biopsy and many other tests in the coming weeks. Less than a month later began chemo. The chemo portion of our treatment plan is now over. we are about to undergoing surgery to remove as much of the tumor as possible. Please feel free to message me. My son is now 14 months old.

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi Astroboy and everyone else- I am glad we can all share our stories and offer what we can to support, encourge, and give information to others here.  I was diagnosed at 13 months old I had a tumor on my adreanal glad and kidney and at some point my parents were told it was a whilms tumor before I finally was diagnosed with Neuroblastoma.  I don't know what stage I had started with but it went from there to stage 4 and i had chemo and radiation at different areas one of which had been my skull area because they had also found one there drs said it had matatsized there. I had surgery to remove one of my kidneys and adreanal gland. Since it all happened in the 80's (I was born in 79) I can't say for sure what the long term effects would be now.  I can say what mine are/have been- ie- Cardiomyopathy, Scoliosis, learning disabilites, weak immune system, low growth hormone, and high sensitivity to humid/hot temps and cold temps.  I really don't want to cause worry that any of these are possibilites but they may be.  I think the side effects depend on where the cancer is, how it is treated, and what effects the treatments leave depending on how much is used.  One of the chemo drugs that was used on my cancer was experimental and it is what caused my heart conditon but I don't know the name of it.  i have been cancer free since 1981 i think and I have not had any recurrance or any new cancer diagnosis.  Is there a way to find out what the possible treatments are- what drugs are being used today to treat NB and what possible effects could they have? I would ask it wouldn't hurt.  Look into finding a late effects doctor,specialist or clinic.  Hope this is all of some help to those dealing with childhood cancers.  

 

Jayde
Posts: 2
Joined: May 2013

Hi there I am a Neuroblastoma survivor and have been cancer free for about 24 years! In 1997 my oesophagus had some issues and I was diagnosed with Acalasia an aged disorder at 12, but had surgery and am all good now aside from a few querks here and there. I would love to hear of others stories. I also wonder if having children has been hard for many? I also worry sometimes that it may come back or that I could get some other form of cancer as the years go by but so far so good! I live a pretty happy normal healthy life and am now a paediatric Registered nurse myself. Thanks for reading it is a pleasrue to see so many other Nauroblastoma survivors living life well :) 

Jayde
Posts: 2
Joined: May 2013

Hi there I am a Neuroblastoma survivor and have been cancer free for about 24 years! In 1997 my oesophagus had some issues and I was diagnosed with Acalasia an aged disorder at 12, but had surgery and am all good now aside from a few querks here and there. I would love to hear of others stories. I also wonder if having children has been hard for many? I also worry sometimes that it may come back or that I could get some other form of cancer as the years go by but so far so good! I live a pretty happy normal healthy life and am now a paediatric Registered nurse myself. Thanks for reading it is a pleasrue to see so many other Nauroblastoma survivors living life well :) 

Mik Scarlet's picture
Mik Scarlet
Posts: 2
Joined: Nov 2013

I was diagnosed 8 weeks after birth and already by that time my tumour was the size of a tennis ball. I was part of a trial for new treatment with saw me receiving Vincristin Sulphate as part of my chemotherapy, and high doses of radiotherapy alongside having the majority of the tumour surgically removed. I was given 5 years at the very most by my surgical team. Yet 48 years later I am still here.

It wasn't all plain sailing. At the age of 15 a side effect of this experimental treatment hit home and my spine collapsed. Apparently the chemo had caused my bone to grow with bigger holes in it that would normal in bone structure, so one of my vertebrae couldn't take the weight of my growing teenage body and collapsed. After two major surgeries I left hospital a full time wheelchair user. I didn't see this as bad thing, as when I first went into hospital everyone was so sure my cancer had come back, even after 15 years. So loosing the use of my legs was nothing compared to death.

In fact this whole period changed my life for the better. Until then I had been a very good boy, studying hard and doing as my parents asked, but afterwards I took control of my life. I decided to pursue a career in music and formed a few rock bands. Oh and I dyed my hair all manner of colours and dressed like you had to in the 1980s! Weird. I then got spotted by a TV exec and landed a job as a TV presenter. This really took off and by 1992 I was a well known face on UK TV. I also went across the pond and even featured on the cover of TV Week magazine. I even won an Emmy that year too! I went on to front several UK TV shows and worked for all of the major UK channels.

Annoyingly in 1999 I was involved in a car accident that broke my back for a second time. I think it is clear I was meant to be disabled eh? I had to stop working for a while, and had to undergo more surgery. But this was nothing to do with my cancer, just a truck being driven very badly that runover my super cool red sports car, with me in it! I am now rebuilt yet again and back at work. I now mostlywork as a journalist and columnist for UK magazines, web-sites and papers, but also appear on TV and radio. In 2005 I married my wonderful wife Diane, live in the heart of busy Camden in London and have a fantastic life. On December 27th I shall be presenting an Xmas music show here in the UK, on BBC 3 Counties Radio between 11am & 1pm UK GMT. Tune in for some festive laughs.

Sure every now and then another side effect of my cancer treatment pops up. Skin that becomes weak, allergies to crazy stuff, plus the weird bones density issues, but all in all I am one healthy SOB despite it all. My only regret is that every time I have an X-Ray or MRI my expected super powers don't kick in. I mean, after this much radiation I must be due some super powers some time soon?

It's great to hear so many other people have survived Neuroblastoma. I do a lot of work here in the UK with charities, the NSOC and NCCA, who both fund reearch and support families currently touched by the disease. I know how much the knowledge of those of us who beat Neuroblastoma helps those who are currently engaged in that battle. Even today we are a rare group. We should all be proud of whatever we have achieved and see each day as a gift to be cherished and enjoyed.

To find out more about me maybe visit www.mikscarlet.com and for a few of my pop videos and TV shows try http://www.youtube.com/user/MIKSCARLET

Catiebugbee
Posts: 14
Joined: Aug 2010

Had neuroblastoma when I was 4-years-old, mid 1990s. Met or connected with a lot of kids then and over the years who had NB, lost my last childhood NB friend a couple of years ago after she relapsed after many years of being "in the clear" so to speak. The biggest late effect I struggle with today is not my scoliosis or pain from scar tissue lesions but anxiety - I live in a constant state of anxiety, usually mild but often peaks. My remaining adrenal gland is overactive and apparently contributes a lot to the ongoing state of anxiety I have learned to live in since I was around 8-years-old. But it's really been getting me down lately as it is inhibiting my ability to get through what will hopefully be my final year of training to become a health professional. Anyone else out there who had NB also have experience with this?

nicoleallenB
Posts: 3
Joined: Jun 2014

I feel bad whenever I see infants suffer from such illness. It is hard for infants to survive from Neuroblastoma. It is a need for everyone to be educated for this type of disease for us know how to react and what to do for the child to survive.

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