Neuroblastoma

Mom1

indiareynolds said:

NEUROBLASTOMA DIAGNOSTED IN 1965
I am a 45 year suvivor and I want to find out how many more uf "us" there are out..

My son was diagnosed in 1971.
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

Survivor 2 times 1992 and 1994(stage 4 both times)
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.

joyinmyheart

neuroblastoma
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

joyinmyheart said:

neuroblastoma
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!

Another Survivor
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

kroberts4 said:

Another Survivor
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?

congratuations
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.

benwenli

chefjade13 said:

Survivor 2 times 1992 and 1994(stage 4 both times)
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.

Your survivor story from two
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,

formysis

Adult Neuroblastoma survivors?

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

Hi all
My Nephew Alexander,

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.

 

AstroBoy

benwenli said:

congratuations
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.

Hi Benwenli

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

crs

AstroBoy said:

Hi all
My Nephew Alexander,

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.

 

astroboy

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.

Jayde

NEUROBLASTOMA SURVIVOR

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

NEUROBLASTOMA SURVIVOR

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

Neuroblastoma Survivor in UK from 1965

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

Neuroblastoma

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?

Aquagirl18

AstroBoy said:

Hi all
My Nephew Alexander,

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.

 

my story/long term effects of treatments

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.  

 

nicoleallenB

I feel bad whenever I see

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.

clairegodden73

 
Hi,I had Neuroblastoma in

 

Hi,I had Neuroblastoma in 1974.I am now 40 and going strong.I only have one kidney which is not working correctly. But I have been talking to a lady whose daughter had the same. But unfortunately the little girl died last week.makes you realise how strong and lucky we are.

clairegodden73

clairegodden73 said:

 
Hi,I had Neuroblastoma in

 

Hi,I had Neuroblastoma in 1974.I am now 40 and going strong.I only have one kidney which is not working correctly. But I have been talking to a lady whose daughter had the same. But unfortunately the little girl died last week.makes you realise how strong and lucky we are.

There are alot of side

There are alot of side effects and it's very daunting when you realise what you had.

clairegodden73

Mik Scarlet said:

Neuroblastoma Survivor in UK from 1965

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

Nice to hear that you have

Nice to hear that you have got on with your life.it's weird as I love to sing but never did anything about it.I should get out there and try

barbarickl

Stage IV now cancer free!

My daughter Carissa was 9 months old when she was diagnosed with stage IV Neuroblastoma.  She went through surgeries removing the tumor and her kidney, along with the hardest chemo because of the stage she was in.  She is now a healthy 8 year old and has been cancer free for close to 6 years!  Thank you so much for starting this thread.  I occasionally get caught up in the statistics and love to see survivor stories.  I am so happy that you made though and that you are doing well!