Any 'older' neuroblastoma survivors out there?

maryruth1035

Hi all--

I'm a 51 year old survivor from neuroblastoma, discovered when I was 8 weeks old in 1958. Is there anyone else out there who has survived a neuroblastoma from the '50s or 60's? I'm wondering if anyone has had problem with ganglioneuromas? Anyway, I'd be interested in talking with others who have survived this beast. --Maryruth

copshie

old neuroblastoma ers
Hi Maryruth, I would really like to get in touch with you-had NB in 1959
Caroline

ShanaeLea

Born in 1982
Hi, I found your post when I was searching for neuroblastoma survivors. I was born in 1982 and was diagnosed with a neuroblastoma when I was 4wks old. I am healthy today but would like to chat with others who survived to find out if as they got older, there were any side effects or realated health issues.
let me know if you'd like to chat,
Shanae

Aquagirl18

ShanaeLea said:

Born in 1982
Hi, I found your post when I was searching for neuroblastoma survivors. I was born in 1982 and was diagnosed with a neuroblastoma when I was 4wks old. I am healthy today but would like to chat with others who survived to find out if as they got older, there were any side effects or realated health issues.
let me know if you'd like to chat,
Shanae

Neuroblastoma
Hi everyone, I had neuroblastoma when I was around 13 months old. I was born in 1979 and I am and still standing as strong as I possibly can. I went into remission quite some time ago but I was left with some side effects. I was treated with chemo and radiation and had surgery as well. I had stage 4 and a tumor was on one of my kidneys and my adreanal gland. I had radiation to my skull where the cancer had matasizied (sorry don't know the proper spelling) anyway I do have some late effects and if any of you would like to chat or have any questions let me know.

BDK2009

Aquagirl18 said:

Neuroblastoma
Hi everyone, I had neuroblastoma when I was around 13 months old. I was born in 1979 and I am and still standing as strong as I possibly can. I went into remission quite some time ago but I was left with some side effects. I was treated with chemo and radiation and had surgery as well. I had stage 4 and a tumor was on one of my kidneys and my adreanal gland. I had radiation to my skull where the cancer had matasizied (sorry don't know the proper spelling) anyway I do have some late effects and if any of you would like to chat or have any questions let me know.

Neuroblastoma
AquaGirl, I was treated with Neuroblastoma around the same time you were. I was originally diagnosed in 1977, treated with surgery but it came back. Then I was treated with Chemo, radiation and a bone marrow transplant in 1980. I have had some hiccups along the way but by and large have remained in pretty good health since. I would be interested in knowing some of the late effects you experience to see if they are similar. Hopefully we can chat.

survivor1983

ShanaeLea said:

Born in 1982
Hi, I found your post when I was searching for neuroblastoma survivors. I was born in 1982 and was diagnosed with a neuroblastoma when I was 4wks old. I am healthy today but would like to chat with others who survived to find out if as they got older, there were any side effects or realated health issues.
let me know if you'd like to chat,
Shanae

25 yr old Neuroblastoma Survivor
Hi, I am also a Neuroblastoma survivor born in 1983. I was diagnosed at birth and a tumor was removed from my pelvis area when I was 10 days old. I have had an unbelivable amount of health problems my whole life which I believe are probably related to the treatment. I am always searching for more info and answers so that maybe someday I can find something that will help me through these side effects. If anyone wants to compare stories feel free to message me.

My year 1952

survivor1983 said:

25 yr old Neuroblastoma Survivor
Hi, I am also a Neuroblastoma survivor born in 1983. I was diagnosed at birth and a tumor was removed from my pelvis area when I was 10 days old. I have had an unbelivable amount of health problems my whole life which I believe are probably related to the treatment. I am always searching for more info and answers so that maybe someday I can find something that will help me through these side effects. If anyone wants to compare stories feel free to message me.

Hi MaryRuth
I just posted in the Neuroblastoma thread. I am 1952, but I had no chemo or radiation.

I've had dozens of lipomas (WIKI: A lipoma is a benign tumor composed of fatty tissue. These are the most common form of soft tissue tumor.[1] Lipomas are soft to the touch, usually moveable, and are generally painless. Many lipomas are small (under one centimeter diameter) but can enlarge to sizes greater than six centimeters. Lipomas are commonly found in adults from 40 to 60 years of age, but can also be found in children.)

Some were the size of almonds, one the size of a golf ball. I had about twenty removed from my arms and chest. Otherwise healthy...not counting cholesterol, high blood pressure, and foot bone spurs. lol.

BS

jillebob

My year 1952 said:

Hi MaryRuth
I just posted in the Neuroblastoma thread. I am 1952, but I had no chemo or radiation.

I've had dozens of lipomas (WIKI: A lipoma is a benign tumor composed of fatty tissue. These are the most common form of soft tissue tumor.[1] Lipomas are soft to the touch, usually moveable, and are generally painless. Many lipomas are small (under one centimeter diameter) but can enlarge to sizes greater than six centimeters. Lipomas are commonly found in adults from 40 to 60 years of age, but can also be found in children.)

Some were the size of almonds, one the size of a golf ball. I had about twenty removed from my arms and chest. Otherwise healthy...not counting cholesterol, high blood pressure, and foot bone spurs. lol.

BS

Survivor of the 70's
I was diagnosed with Neuroblastoma in 1969. I went through chemo and surgery. I don't know much about it. I have a scar following on my left shoulder blade ending ending before my breast. I never really remembered my treatments. I was seen at the University of Minnesota hospital in Minneapolis until I was about 12 years of age. I have two children. None which had any cancers. My oldest is epileptic which we believe was due to her premature birth. I have noticed a memory problem. I am very good at math though. It states survivors of neuroblastoma have a low rate of marriage. I am married. I wonder how many of you are married. Also it states about lower jobs. I have noticed when I did have a more responsibility at a job.. I hated it. I just enjoyed doing my job without the stress. At 13 I did get shingles for worrying about going to camp. I never did go because the day before camp I was diagnosed with shingles. I worry way too much. I have been having alot of sleeping problems. I have had seizures due to the fact of lack of sleep. CT Scan, sleep study, blood work all came back fine. Who knows? Glad to meet you all.

tears_from_heaven

ShanaeLea said:

Born in 1982
Hi, I found your post when I was searching for neuroblastoma survivors. I was born in 1982 and was diagnosed with a neuroblastoma when I was 4wks old. I am healthy today but would like to chat with others who survived to find out if as they got older, there were any side effects or realated health issues.
let me know if you'd like to chat,
Shanae

i had neuroblastoma
Hi I was searching online and decided to look and find information about neuroblastoma when I came across this website I started to readabout others whom like myself have or are dealing with this type of cancer, I was a normal little girl I even started to talk at an early age, so we had no idea that I would ever have this. It was not til later when my mother noticed I had to use the bathroom a lot and wouldn't want to eat, as a lot of mothers think I was a picky eater so we had no other clue of what was taking place. I was born in puerto ricoso things were not close enough as in the united states. It wasn't til I started to limp out of nowhere that something was right I was bornin the middle 70's. Many test were done but we always got the same answer, annd were sent home, it was til a doctor from new york came to the childrens hospital in pr who was brought to look at my case, that we found out I had neuroblastoma, mine was in the lower back of my spinal cord. I had to major operations at the time the first one was to look around and see what was happening, and the second one left me with nerve damage, I was given chemo, and radation for about 3 mnths to make sure it was all gone. I am in my early 30's I have had a lot of things to deal with. Due to the operation my legs aren't srtong enough so I have to use crutches, and a wheelchair cuz I get tried a lot. I am not good in the math, but I am not sure if that has anything to do with the treatments I received, because they were not very long, I am short around 4'11, but my brother is short so I don't know if that has annything to do with that or not. I have a long scar in my back from the two operations as a little girl I was around 6 or 7 maybe. I don't have regular periods either and was told it could be cuz of the treatments, but it tends to runn in my family. Its something I don't think about much the only reminder that I have of this the fact that I can't walk. Which is something hard because a lot of people tend to judge a person see it different if you have a conditonyet its inside like diabetics, heart problems ect, but when everyone can see it a lot of people just look at you as a handicapp. I had a knee replacement but that wasn't due to the neuroblastoma. Their are three types the low risk. The middle risk, and the high risk, which of course the first one cannt be easly treated, my tumor as my tells me was the size of a bean when they showed her the xrays, but because of the operation on the back I was left that I can't walk. I have movements of my legs, and feeling. But it isn't like everyone else. My mother even now doesn't like talking about that topic with me, I see the special they air on saint jude and I cry because I picture myself and can relate to their pain. I was told had I had the tumor now and where it was located it would had been removed through my stomach, and I would probably be walking its always a reminder to me. A few yrs ago I was tested again because I was suffering frm really bad back pain, and the doctor said let's run some tests to see if the tumor came back, and I thought at my age. It wasn't the tumor its that my back muscles are weak so I have pain. Even though I am cancer free because of the other things involved I kind of haunted by all my suffering and pain. I am sorry to make this so long just wanted to share with you my story I hope god continues to bless you with lots of happiness and healthy....a new friend

JeannieRu

I am 54.
Hello!

Well I heard there was one woman older than me but the 1952 guy in this thread makes me feel like a kid!

I'm still alive and kicking with a lot of battle scars but over-all I think I'm healthier and more active than most folks my age. I could complain but after this many years I just feel blessed.

Jeannie

danalynn

Aquagirl18 said:

Neuroblastoma
Hi everyone, I had neuroblastoma when I was around 13 months old. I was born in 1979 and I am and still standing as strong as I possibly can. I went into remission quite some time ago but I was left with some side effects. I was treated with chemo and radiation and had surgery as well. I had stage 4 and a tumor was on one of my kidneys and my adreanal gland. I had radiation to my skull where the cancer had matasizied (sorry don't know the proper spelling) anyway I do have some late effects and if any of you would like to chat or have any questions let me know.

hey my name is dana i had
hey my name is dana i had neuroblasttomaa when i was 15 months old. I was born march 11 1989. My cancer was caught so quickly that i did not need any chemo or radiation. MY cancer was removed the cancer was in my abdomen the size of a plum.. what are some of ur side effects i will give u my email if u would like to contimue talking my email is danapalmero@hotmail.com

danalynn

Aquagirl18 said:

Neuroblastoma
Hi everyone, I had neuroblastoma when I was around 13 months old. I was born in 1979 and I am and still standing as strong as I possibly can. I went into remission quite some time ago but I was left with some side effects. I was treated with chemo and radiation and had surgery as well. I had stage 4 and a tumor was on one of my kidneys and my adreanal gland. I had radiation to my skull where the cancer had matasizied (sorry don't know the proper spelling) anyway I do have some late effects and if any of you would like to chat or have any questions let me know.

hey my name is dana i had
hey my name is dana i had neuroblasttomaa when i was 15 months old. I was born march 11 1989. My cancer was caught so quickly that i did not need any chemo or radiation. MY cancer was removed the cancer was in my abdomen the size of a plum.. what are some of ur side effects i will give u my email if u would like to contimue talking my email is danapalmero@hotmail.com

Third Sister

My sister - 1949
My sister was born in 1948 and diagnosed with neuroblastoma at 6 months and again at 18 months. She was treated at Sloan Kettering in NY with surgery and radiation only. Her cancer started around the adrenal gland, spread to her ovary. She is still cancer-free at 63 but has had a host of other medical problems related to the surgery and radiation. Among other things, she could not have children, but she is more than 25 years into her second marriage. I am happy to hear from all the other survivors - my sister's doctors never seem to know what to make of her or how to treat her. There just is not much knowledge about people who have survived cancer and the treatments for so long. She has not had ganglioneuromas, though.

scutchgrass

JeannieRu said:

I am 54.
Hello!

Well I heard there was one woman older than me but the 1952 guy in this thread makes me feel like a kid!

I'm still alive and kicking with a lot of battle scars but over-all I think I'm healthier and more active than most folks my age. I could complain but after this many years I just feel blessed.

Jeannie

Old NB survivor!

Hi

I am a (55yr old) female survivor and I would love to share my life experiences with a fellow traveller (if possible). I was diagnosed in 1963 and received surgery and radiotherapy but no chemo; a fact that I think in the long term saved my life! Please contact if you can................................

styln06

My son is 26 and was diagnosed with neuroblastoma at 12 wks old

He is now 26 ....he struggles with lots of late effects from treatment physically and mentally. I am hoping to find a friend that he can talk with who has been through this same  trauma. 

Thanks

Chase's mom..... TAMMY in Indiana

 

 

Ucbcats96

scutchgrass said:

Old NB survivor!

Hi

I am a (55yr old) female survivor and I would love to share my life experiences with a fellow traveller (if possible). I was diagnosed in 1963 and received surgery and radiotherapy but no chemo; a fact that I think in the long term saved my life! Please contact if you can................................

I am similar, Scutchgrass!

I was diagnosed in 1964 at age 6 with ganglioneuroblastoma. I had surgery thru my abdomen and back, the later severed a nerve(s)and I had to learn how to walk again. Within a year I was back to being an athletic, rough-and-tumble child. My surgeries were followed by radiation therapy. I am now 59 and loving life! From what I read in the 80's, even in 1984 the survival rate was 35%. Glad we made it!

Ucbcats96

styln06 said:

My son is 26 and was diagnosed with neuroblastoma at 12 wks old

He is now 26 ....he struggles with lots of late effects from treatment physically and mentally. I am hoping to find a friend that he can talk with who has been through this same  trauma. 

Thanks

Chase's mom..... TAMMY in Indiana

 

 

About your son...

I would be glad to speak with him. Survivor for 53 years of ganglioneuroblastoma here!

Jessie V

styln06 said:

My son is 26 and was diagnosed with neuroblastoma at 12 wks old

He is now 26 ....he struggles with lots of late effects from treatment physically and mentally. I am hoping to find a friend that he can talk with who has been through this same  trauma. 

Thanks

Chase's mom..... TAMMY in Indiana

 

 

Neuroblastoma Kids

Hello Tammy,

I saw your post from many months ago, but not sure if you'd had any response.  I'm JESSIE in California (near SF).  My son, Logan, is almost 21 now and was diagnosed with Stage 4 NB at age 18 months.  As he was high risk, he endured chemo, radiation, surgery and stem cell transplant.  He has late effects and I am frustrated about the lack of info and the lack of doctors for adult survivors of this cancer.... I am curious about how you transitioned and found the same level of support and care in the adult medical world, after "outgrowing" the childrens' facilities (I'm assuming you had him at a Children's Hospital?)  He has several physical late effects and memorizing things can be difficult, but he is persevering in college and hoping to become a nurse in the next few years.  

If you're interested in sharing stories and encouragement and perhaps resources or advice, let me know.

Misterby1

https://csn.cancer.org/discussion/comment/688413#Comment_688413

Misterby1

Survivor of 70

I was born in 1969 with a NB behind my heart, attached to my spine. I had surgery and radiation in early 1970. The radiation stunted the growth of my ribcage and caused scoliosis. I had several surgeries as a child, plus I was asthmatic and had an impressive list of allergies. Had my ribcage rebuilt (fail) at 9 yrs old, a few weeks before my 10th birthday. Had some more surgeries along the way... At 13 I had spinal fusion, but ended up spending an extra 5 weeks bedridden due to a collapsed intestine. God is good, life goes on.

Now I'm 53 yrs old (2022). My parents were told I wouldn't live past 5. Once again, God is good. I'm a little physically slower than the common person, but I basically live a normal life.