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survivor of childhood cancer

crawfordc
Posts: 8
Joined: Feb 2001

I am a 28 year old survivor of childhood cancer. Iwas diagnosed with a brain tumor in February of '82. Is there anyone else like me out there? Any other adult survivors of childhood cancer? Please,if you're out there write to me.

themodeldoctor
Posts: 3
Joined: Apr 2002

What have been your long term effects?

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btcat
Posts: 63
Joined: Mar 2005

hmmm, major short term memory problems, nervous system problems, minor digestive system problems, slowed cognition, a majorly messed up spine, emotional problems, etc. Oh I guess I shouldn't forget the begning tumor on my brain I got as a long term effect of the high intensity radiation about 20 yrs after treatment.

oneeye
Posts: 1
Joined: Apr 2002

hey,I had retinoblastoma in my right eye when i was 6 mo.s old> i lost my eye and was told i could develop any number of cancers throughout my life. i was given radiation treatments , and that was fairly new at the time. either or ,im 41 years old now and i have a beautiful son ,who has no cancers at all, and i thank GOD my family and friends for what i have! ALL i can say is never give up ,when your down,feel good about all you have known and all the people who have touched you in your life and never ever feel sorry for yourself ,because you are the best hope you have!!

erd
Posts: 1
Joined: Feb 2004

my daughter is 2 1/2 and lost her left eye on 10/03 to retinoblastoma. We just moved to florida from new york and had our first EUA in Miami in Jan. We also just got back from the ocularist who put a largertemp eye in and it looks great. My problem is she keeps taking the eye out. I think for shock value, does anyone have any ideas or suggestions on how i can reduce the amount of times she takes it out? I'm afrais she'll do damange to the eye or her self.

lbower
Posts: 1
Joined: Jan 2005

Hi, I am so glad to hear from you. My Grandson is eight and over the Christmas break he was diognosed with cancer. I think it is retinoblastoma but it may be rhabdomyosaroma. It was in the muscle tissue behind his right eye. We are waiting to hear what stage he is in and needless to say, I needed to hear from a survivor. They tell us he can live through this but I am so scared. Hearing from adults who have lived through childhood cancer helps me to have hope. Thank you for posting.

markie774
Posts: 2
Joined: Mar 2005

Hello Oneeye, I'm new to this but, am very glad I found this network. My whole reason for finding this is that I'm having a problem lately and was wondering if anyone else out there has dealt with it. So, here's my question...
Have you at anytime in your life had your right eye suddenly swell from the inside out? Mine has off and on for about 10-15 years now. I don't know what causes it. It's painful and I have to remove my eye and keep it out for a few days. Had anything like this happen to you? Sorry to be so short and blunt, I'm short on time right now and wanted to at least ask someone. Thanks in advance for your response.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to consider contacting Oneeye through the internal CSN email system if you are looking for a quick reply. You can do this by clicking on the envelope icon next to her message.

I hope this information has been helpful.

Take care and be well,

Dana
CSN Dana

themodeldoctor
Posts: 3
Joined: Apr 2002

I am a 20 year survivor of Wilm's Tumor. I am now 31. If you have any questions, I would be happy to answer them.

eneldo
Posts: 5
Joined: Oct 2002

Hi, sorry to bother you! My 16yr old girl has grade 4 "Glioblastoma Multiforme" cancer just diagnosed in sept 10, 2002. The operation removed 96% of it and now she is doing chimo (Temodol). The doctors said with radiotherpay alone she will live only 18 months? I have lots of questions, please email me at eneldo@galleria.ca, thank-you.

chris1964
Posts: 2
Joined: Jan 2003

I am 38 years old and have been in remission since 1977. I had Hodgkin's Disease that was diagnosed in stage 3B in 1974. It was treated with surgery (removal of spleen and lymph nodes), chemotherapy MOPP and radiation. I had 5400 rads to my neck, 5400 rads to my mantle and 5400 rads to my abdomen and 5400 rads to my pelvis (today that is an extreme amount of radiation but I was treated on experimental protocol due to my staging, etc.)

I still have complications with a compromised immune system due to spleenectomy and some other issues. About a year ago I began to be short of breath and found that the heart murmer I developed after treatments was really loud. My mitral valve and tricuspid valve are damaged due to radiation damage and I have a smaller left kidney. Due to other radiation and chemo complications the heart problem is inoperable.

I am married and have 2 daughters. Due to declining health I am no longer working but taking the time to enjoy our girls and spend time with hubby and two doggies.

Still there are great drugs to help it so I am optomistic as always. Life is good however and I never take a moment for granted.

I have been active in the Minnesota study for years and agree the Adult Survivor Book is a wonderful tool for any childhood survivor.

sorcharose
Posts: 17
Joined: Oct 2002

Hello, I was diagnosed with ALL at the age of 3. I am now 24 and have been in remission since the age of 6 or 7. It doesn't seem like I am an 18 year survivor, but that's what I am told. I have acquired some long term disabilities, however, all things considered I'm doing well. At present, I have taken quite an interest in meeting other early childhood cancer survivors. There is a relieving quality in the knowledge that we are not alone / few in numbers and better still, we seem to be thriving. sorcharose

Vic
Posts: 1
Joined: Aug 2003

I am 19 and my 1s cabcer was diagnosed at the age of 17. It is a pedatric cancer called pnets. the tumor was removed and I went for intense radiation to the head and spine. I was in remission for 18 months up till this April 2003 when testing had found that the cancer was back and I have tumors up and down my spine. They are treating me with chemo twice a month. It's a very agressive treatment. Any one have advice on how to stay strong and make the treatment any easier? Would love to talk. You can e-mail me at vickimatthys@msn.com

babygurl84
Posts: 8
Joined: Oct 2003

What kind of long term disabilities have you acquired? I was also diagnosed with ALL, i was only 20 months old and under went treatment till i was 5 yrs old. As i have gotten i have noticed that there are cliches here and there and have always been pretty sure it was from the leukemia and treatment but i didnt know the severity of them, and it has been a bigger issue within the past 3-4 yrs. Did you have any test(s) or anything to determine your disabilities or long term effects?
Kristi

babygurl84
Posts: 8
Joined: Oct 2003

What kind of long term disabilities have you acquired? I was also diagnosed with ALL, i was only 20 months old and under went treatment till i was 5 yrs old. As i have gotten i have noticed that there are cliches here and there and have always been pretty sure it was from the leukemia and treatment but i didnt know the severity of them, and it has been a bigger issue within the past 3-4 yrs. Did you have any test(s) or anything to determine your disabilities or long term effects?
Kristi

kfowler1
Posts: 3
Joined: Sep 2003

I am new to this board. I have been in remission for 25 years now. I was diagnosed when I was 3 years old with (ALL). My hat goes off to the wonderful doctors at the Long Island Jewish Medical Center.

swn1123's picture
swn1123
Posts: 3
Joined: Jan 2004

I am a 30 year survivor of cancer. Diagnosed with Ewing's Sarcoma at the age of 15. Treated with surgery , chemo, and radiation at M.D. Anderson in 1973 and beyond. I am a memeber of the Long-Term Childhood Cancer Survivor's Study conducted by the University of Minnesota. If you want to talk, let me know!!

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

I've seen a lot of you talking about this Long-Term Childhood Cancer Survivor's Study conducted by the University of Minnesota. Can you tell me more about this please? E-mail me at c-cat@snailmail.net

my_littlehero
Posts: 2
Joined: Sep 2010

Hi my name is Rita , my son is Luca, he was dx with ewings in 2010
7 1/2 he's 9 now he had chemo, radio, and surgery .
Life has returned normal for him, but I live In fear , I always searched
Online for long term survivors of ewings, was not easy. I would find stories that were
Dated and no contact info. I would love
To hear from a long term survivor !

Aquagirl18
Posts: 45
Joined: Apr 2003

Hi I am a 25 year old survivor of neuroblastoma I had it when I was 13 months old and it has been in remission for years. I am hope to make some new friends here and lend my support.
Caty

codelv
Posts: 1
Joined: Mar 2007

Caty, my son has been in remission from neuroblastoma for almost 1 1/2 years, just want to know if you follow any special diets or vitamins...just want to make sure i do all i can to keep my son free of neuroblastoma.

Thanks
Guillermo

mackenzie_b
Posts: 1
Joined: Oct 2009

i know you posted this comment a few years ago but my daughter has stage 4 neuroblastoma and it is very hard to find long term survivors, if you get this please e mail me nln44266@aol.com

jillebob
Posts: 12
Joined: Aug 2009

I seen your comment on the "childhood cancer" site..for long term surviors..
you need to search for the site Neuroblastom on the cancer.org site. There is a few us here...
http://csn.cancer.org/node/163926
If you also are a facebook person, there is groups on facebook about neuroblastoma survivors. You could check that out also...

IreneG
Posts: 3
Joined: Feb 2007

Hello, crawfordc... I, too, was diagnosed with a brain tumor... medullar blastoma... in 1980. I am now 38. Write to me so we chat.

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

Sorry it's taken me over a year to reply. I've not been back for a long time. I hope I haven't waited too long to reply. I hope you still want to chat. I'd like to talk to you. You can e-mail me at c-cat@snailmail.net

mghalayini
Posts: 1
Joined: Jul 2009

Irene G...I saw your posting...and would love to reach out to you if you are willing...I have a 10 year old nephew that 4 weeks ago was diagnosed with Medulla Blastoma and underwent surgery the next day. He is now dealing with Posterior Fossa...and just started his 6 week radiation 2 yesterday.

I am trying desperately to find some hopeful survival stories and people that have been through this and came out like a champ...right now...that is what his mother and father need more than anything...to know that there is hope for their boy to have a normal life...to be able to be himself again.

If there is anyone out there that had this childhood Medulla Blastoma and is willing to share thier story, I literally beg of you to respond...we just haven't been able to find those stories of hope to focus on for the future...please respond and share your story...this family needs to know there is a way through and out of this nightmare. Please email me at jamara@pumpkinheadkids.com. thanks.

thank you and prayers to you all....

Jamara

Vickie78m's picture
Vickie78m
Posts: 3
Joined: May 2007

Hi I had All when i was 8 and now Im 29 and doing fine I just celbrated my 6 month wedding anniversary

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

Beautiful picture Vickie. Congratulations on the wedding anniversary. That would be over year now I suppose.

heart-2
Posts: 4
Joined: Oct 2009

Congratulations!

Chrissean
Posts: 2
Joined: Aug 2005

I wanted to contribute my story too. I was diagnosed with Hodgkin's Disease in 1991 at the age of 15. I was treated with chemo and radiation and have been in remission since. I had a few scares since then, thyroid nodules and fibroids but everything is ok. I got married in July and am now trying to get pregnant. I am trying not to worry that i will have complications with getting pregnant or during labor. I was told many things to watch out for during my last visit to a Survivors Clinic, such as congestive heart failure during labor.

I am as happy as i've ever been and thanking God for all his blessings.

babygurl84
Posts: 8
Joined: Oct 2003

I had ALL ( leukemia) at a young age and under went every type of treatment you could think of including radiation to the brain, and minus bone marrow transplant. But for the most part i under went it all, in the beginning of the research my mother had to basically sign her rights away medically wise.....2 out of the 5 survived and i am blessed to say i was one of those 2. I'm not really sure what Hodgkin's is compared to Leukemia, and the severities of it. I just wanted to say this, i have been able to have Two beautiful little girls, without any major complications. If its meant to be you will get pregnant you just have to have faith in god and not worry so much what the world is saying because that is where we will get tripped up and lose our focus on god, who CAN do all things big or small......

alaskana
Posts: 2
Joined: Nov 2008

My son is 7 and had 3 years of chemotherapy for ALL. He is in 2nd grade, but teachers say he has trouble focusing and finishing work-tires easily. Otherwise everythings ok. He's only been off the chemotherapy since May. I was wondering if you remembered how long it takes to feel up to speed after chemotherapy and if lack of focus and tiring is normal this many months off the medicine? There seems to be a lot of information for undergoing chemotherapy, but not much for what happens after treatment? Thanks for any insight you can provide for me.

btcat's picture
btcat
Posts: 63
Joined: Mar 2005

I really don't remember a particular amount of time to get back to speed. Unfortunately, some of us don't, particularly those who've had radiation and or brain surgery like myself. But there are many out there who have come back to live full,or at least close to it, mental function. There are several books and organizations out there for survivors One book in particular I can think of is kind of a "handbook" for survivors of cancer. I can't remember the name exactly, but the author is Nancy Keene, i think. A great resource that I used from about the time of my operation/diagnosis is Candlelighter's Childhood Cancer Foundation. thier website is candlelighters.org . Check them out.

heart-2
Posts: 4
Joined: Oct 2009

Hi I hope this helps. I grew up with learning disabilities, and still have some. I don't remember when they started. I got my cancer (ALL) at 3 years old and recieved chemo and radiation. I just remember not doing well in public school and was pulled out. I was homeschooled from the 6th grade on till I graduated. I've gotten some tutoring in the past and have learned ways to get around my learning problems. I never got back up to speed with others. I have found the ways I learn best and use them. I'll be praying for you and your son.

heart-2

babygurl84
Posts: 8
Joined: Oct 2003

I had ALL ( leukemia) at a young age and under went every type of treatment you could think of including radiation to the brain, and minus bone marrow transplant. But for the most part i under went it all, in the beginning of the research my mother had to basically sign her rights away medically wise.....2 out of the 5 survived and i am blessed to say i was one of those 2. I'm not really sure what Hodgkin's is compared to Leukemia, and the severities of it. I just wanted to say this, i have been able to have Two beautiful little girls, without any major complications. If its meant to be you will get pregnant you just have to have faith in god and not worry so much what the world is saying because that is where we will get tripped up and lose our focus on god, who CAN do all things big or small......

heart-2
Posts: 4
Joined: Oct 2009

With God all things are possible.

showell07
Posts: 1
Joined: Oct 2008

Hey Everyone im a two time cancer survior. I was diagnosed when i was 8(September13 1996) and than again when i was 16 March 2005) im 20 years old now and im doing better. I would also like to meet other survivors. Thanks everyone and congratulations!
Steven Howell,WV

AmazingHands
Posts: 4
Joined: Oct 2008

I found this story about this young girl that developed a brain tumor at the age of 8. She was a normal girl, then one day she fell - just like any other kid may fall, and they later found out that she had a brain tumor. It is an amazing story so I thought I'd share it.

http://youtube.com/watch?v=3ZGCrzTUp40

betnyhope
Posts: 2
Joined: May 2009

WHAT TYPE OF CANCER DID U HAVE

Aquagirl18
Posts: 45
Joined: Apr 2003

Wow all of you are amazing. I am so glad I found this website and I just found this discussion today.
I don't know what to say so I'll start by telling a bit of my story.
I am 29 years old and I was diagnosed with Neuroblastoma stage 4 at around 13 months of age.
I was treated in what my doctors have called the dark ages (1979-1980's) I was treated with chemotherapy and radiation because I had tumors on my kidney and adreanal gland, I had surgery to have them removed and the tumor also matastized to my skull area. They used radiation on my skull and lower chest/stomach area. Then my parents were told about an experimental drug and it caused me to go into heart failure. My cancer was wiped out and I have lived with the late effects of my treatments ever since. I have congestive heart failure its also called cardiomyopathy and disabilites in math and science. I grew up as a child feeling like a small adult and in a way my childhood was taken away. I had to grow up fast and I felt different than my peers and I had trouble being accepted socially. Having had cancer changed my life. I learned a wisdom and a strength that I have carried all my life. I feel blessed to be alive. I am proud to be among so many survivors and I strongly feel we are here for a reason.

Catiebugbee
Posts: 14
Joined: Aug 2010

Me, too! It's really late at night right now where I live and I am very tired, but before I log off here I just want to let you know that I also had NB, but at age 4 years, and so much of what you said sounds like my life!

liveformiracles's picture
liveformiracles
Posts: 15
Joined: Sep 2009

I am 23 years old and I was diagnosed at age 3 with ALL. I love meeting other survivors, and just sharing experiences! :)

Laura

heart-2
Posts: 4
Joined: Oct 2009

I'm new at this. I'm 28 now and had ALL when I was 3years old. The treatment I recieved back then has caused me to grow brain tumors. Currently I've got 3 on my brain and 1 in my left eye socket. It's good to know that there are people out there like me and want to talk. I am free to talk most of the time if you want.

heart-2

lawslegal's picture
lawslegal
Posts: 39
Joined: Aug 2005

My son is a five year survivor of brain cancer, grade II astrocytoma.

I just published a book called, "Michael's Journey" to try to inspire other families going through similar situations.

You can view more about the book and Michael at www.michaelsjourney.net

Best of Luck to Everyone!

Laura, Micahel's Mom

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

I was diagnosed when I was 7 in 1977. It was inoperable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

I was diagnosised with an malignant astrocytoma but now the Cleveland Clinic doctor I've just seen is guessing it was actually a GBM.

If you are interested in more details about my story see "my story" in my EXPRESSIONS.

God bless us all. (He already has!)

benwonderin
Posts: 1
Joined: Mar 2011

I was diagnosed with a brain tumor when I was almost four years old. I am now in my mid twenties. It has been a long road. I haven't ever met someone who had a brain tumor when they were young and lived to grow up. I had a medulloblastoma. Would like to chat with other brain tumor survivors.

lori17
Posts: 2
Joined: Jul 2011

when she was four. I will tell her about this website. She is now twenty-six years old

shellbell81
Posts: 4
Joined: Oct 2011

Hi Lori17

As a mother of a child with medulloblastoma, would you be happy to speak to me?

I need advice from someone who knows what im going through with my 6yr old son..

Shellbell81

shellbell81
Posts: 4
Joined: Oct 2011

Hi Lori17

As a mother of a child with medulloblastoma, would you be happy to speak to me?

I need advice from someone who knows what im going through with my 6yr old son..

Shellbell81

shellbell81
Posts: 4
Joined: Oct 2011

Hi benwonderin

My 6yr old son has medulloblastoma.
Im desperate to speak to survivors of this terrible disease.

So many questions, just not enough answers!
Were you high risk? How did you cope with treatment and did you relapse?

I hope you will be happy to chat to me about this....survivor stories will keep me going.

Shellbell81.

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