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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.

tom_s
Posts: 19
Joined: Feb 2001

Hi. I had Leukaemia (ALL) when I was 9, in 1990 (I'm now 20). Everything seems to be OK now, but I'm keen to meet other survivors.

katiec
Posts: 1
Joined: Feb 2001

Hi there, I am 20 years old. I had AMML (Leukemia) in 1984. I would love to talk to other survivors and see what they're up to. Please e-mail me.

crawfordc
Posts: 8
Joined: Feb 2001

Hi Katie,
I'm sorry it's taken so long for me to write to you. (I figure since I'm the one who started this discussion that I should respond to everyone who enters it.) It took me a while to figure out how to work through the threads of this chat room.
It's so good to hear from other people who had cancer when they were young. From what I've figured, you were 3 or 4 when you were diagnosed. Am I right? What kind of treatments did you go through? Did you have chemotherapy, radiation treatment,etc.? I don't remember what I said about my cancer experience in my first message, so whatever questions you have, feel free to ask me.

God Bless,
Christy

You can also write to me at c-catc@juno.com

chae
Posts: 3
Joined: Feb 2001

Hi Katie,
Is that the same as AML? You've probably seen my other message, but I had AML in '89 and I am now 21.

BMTBohoBabe's picture
BMTBohoBabe
Posts: 9
Joined: Apr 2011

Hi Chae, I was diagnosed with AML in 2004. I would love to talk to a fellow survivor.

JaWnM's picture
JaWnM
Posts: 6
Joined: May 2003

Im a 27 year old Leukimia (ALL) survivor from San Diego, CA. 17 years in remission. I went through 4 years of Chemo and right in the middle of my treatment my Doc had medical burnout and left back to her native country. Lovely huh! Fortunately for me and a few other Childrens Hospital here in SD took over our care and got me to where I am today. Nice and Healthy. Let me know if you would like some input or anything.
John

mm91174's picture
mm91174
Posts: 6
Joined: Nov 2009

I AM LOOKING FOR ANYONE WHO WAS TREATED FOR A.L.L FROM THE MID 70,S THROUGH THE LATE 80,S. WOULD LIKE TO DISCUSS ANY LATE EFFECTS. I AM NOW 37 YEARS OLD, WAS DIAGNOSED IN 76 AND WENT THROUGH APP. 12 YEARS OF CHEMO/RAD "3 RELAPSES" ENDING IN 1988. I WOULD JUST LIKE TO COMPARE NOTES AND SEE IF ANYONE WITH A SIMILAR HISTORY IS HAVING SIMILAR PROBLEMS. PLEASE CONTACT ME AT MM91174@YAHOO.COM

angelagrace
Posts: 2
Joined: Sep 2005

Hello my name is Angela, you sound like me. I got ALL when i was 6 im now 20. I wnat to meet survivors Hit me back!

rory
Posts: 33
Joined: Oct 2000

Hi, my name is Rory. There are a lot of us out here who are survivors of childhood cancer. I was diagnosed with Hodgkin's disease when I was 20. I had 4400 rads to the mantle and 3600 rads to the abdomen. I suffer from some long term effects from the radiation ie. lung damage, hypothyroidism, heart problems, stenosis of the subclavian vein, etc. If you want to learn more about long term effects of treatment, there is a great book I just became aware of entitled "Childhood Cancer Survivors - A Practical Guide to Your Future" by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. You can get it at the local library or buy it at any bookstore. It is a great and informative book for all of us. Hope this information is helpful.

Rory

crawfordc
Posts: 8
Joined: Feb 2001

Hi Rory,
I'm sorry, I don't quite understand. You say that you are a survivor of childhood cancer and you were diagnosed when you were 20. I thought a person 20 years old was an adult. I don't want to be offensive, but I was talking about people who were children when they had cancer and are adults now.
Christy

rory
Posts: 33
Joined: Oct 2000

Christy: I understand your viewpoint. I thought the same way you did until I learned that young children and teenagers up to 20 years are grouped in the same category since their bodies are still growing. Most long-term clinics, such as the one in LA accept adults in the long-term survivors clinics for monitoring when diagnosed at age 25 years and under, and there are exceptions beyond that. If you read the book "Childhood Cancer Survivors - A practical guide to your future" by Nancy Keene, Wendy Hobbie, and Kathy Ruccione you will see what I am talking about. Also, there is a listserv that has several survivors that communicate daily regarding late effects from treatment, it is through http://www.acor.org/LTS. There is also a study currently going on out of Minnesota State Univ. involving a large number of survivors (1 to 20 years)that will publish findings soon on a full array of late effect questions. I hope you find this information helpful.

Rory

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Mobjack
Posts: 6
Joined: Jun 2013

I'm a survivor of Rhabdomyosarcoma which I was diagnosed with at age 12.  I'm currently 51, and just starting to have some major late effects due to my treatments.  Thank you so much for the info on the book.  I am definitely going to check it out!  For years I'd sort of forgotten about the whole thing, and didn't really want to talk about it.  Now I'm having to face the music once again, which is what it is, and I'll do what I must do,  I just don't want to be ignorant about the whole process as I begin to deal with more and more doctors and hospitals.  I do not like giving my care over to a doctor without my direct and intentional participation.  Sounds like this book might be a good place to start.  Thanks again.

Catiebugbee
Posts: 14
Joined: Aug 2010

Darn, I was really hoping I would only have the late effects I already have now in my early 20s, not more even later in life. We don't have any follow-up or late effect studies or clinics where I am from, so I have just pushed the whole experience out of my life and moved on around it. I, too, will have a look at this book incase I have to start dealing with more than just primary health care providers for managment of late effects.

lilliam
Posts: 2
Joined: Aug 2005

Hi Rory,
My name is Tammie, I had Hodgkins when I was 12, 20 yrs in remission now. I was just recently diagnosed with multi-focal thyroid cancer (from radiation) Thanks for info on the book.

babygurl84
Posts: 8
Joined: Oct 2003

Hi, my name is Kristi. I was diagnosed with ALL at 20 months old and was in a research and under went treatment until i was 5 yrs old. i am am now 24. I under went several years of Chemo. Radiation to the brain, spinal tap, bone marrow...u name it. But as i get older i have noticed that there are things im not up to date on or not as fast to catch on as people my age should... i was just wondering if you or anyone else have had the the same long term effects from their treatment. And if so is there treatment now to help, or follow up to find out what is going on? Thanks.
Kristi

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

I have problems like you mentioned; especially that it takes me longer than "normal" to process thinking. I had a 2nd tumor as a late effect of radiation about 20yrs after, on the brain not in it and benign. I now have a titanium plate in my head from that surgery. I hope I can help.
Write to me at kitty.cat72@centurytel.net

gc04
Posts: 3
Joined: Oct 2005

I was diagnosed with ALL as well in the early 80's at age 4. I have the very similiar treatment and long term effects as to what you describe. I also had intensive Chemo, radiation to the brain, neck, and spine, as well as spinal taps...but did not have a BMT. I know there are follow-up centers at some of the major hospitals; but, I have found them to be very unaffective at monitoring anything behind physical health. Whenver I bring up issues related to emotions, cognitive function, etc., the information given to me is very standard - a brochure, pamphlet etc. I have found related books to be mostly uninformative as well. I have been very angry about this, so don't take my bitterness as hopelessness. I think there are therapists and care providers out there, it's just a matter of finding the right ones. If I find anything worthwhile, I will share the information with you!

mm91174's picture
mm91174
Posts: 6
Joined: Nov 2009

I AM LOOKING FOR ANYONE WHO WAS TREATED FOR A.L.L FROM THE MID 70,S THROUGH THE LATE 80,S. WOULD LIKE TO DISCUSS ANY LATE EFFECTS. I AM NOW 37 YEARS OLD, WAS DIAGNOSED IN 76 AND WENT THROUGH APP. 12 YEARS OF CHEMO/RAD "3 RELAPSES" ENDING IN 1988. I WOULD JUST LIKE TO COMPARE NOTES AND SEE IF ANYONE WITH A SIMILAR HISTORY IS HAVING SIMILAR PROBLEMS. PLEASE CONTACT ME AT MM91174@YAHOO.COM

chae
Posts: 3
Joined: Feb 2001

Hi! I just discovered this discussion group and I am so excited to find others who have survived childhood cancers. I am 21 and I was diagnosed with AML in '89. How are you doing?

tom_s
Posts: 19
Joined: Feb 2001

Hi, I'm 20 and had ALL in 1990 and doing fine. What about yourself, how are you?

crawfordc
Posts: 8
Joined: Feb 2001

Hi Chae. It's great to find fellow survivors of childhood cancer. I'm doing good. Just a few left over, probably life long, effects from the tumor, opration, radiation treatment, and chemotherapy.

phydeaux's picture
phydeaux
Posts: 2
Joined: Mar 2001

I was diagnosed with mixed cellular hodgkins in 1976 and considered in remission in 1977. I am now 40 years old and still alive and kickin.There have been some problems over the years resulting from radiation treatment and surgury,but on the whole,I have enjoyed good health.

sparcky
Posts: 17
Joined: May 2001

Hi iam also a survivor of a pediatric brain tumor . I was diagnosed with medulla blastoma in 1966 at the Hospital for Sick Children in Toronto Canada. I belong to a group at sick kids called Brain child. You may want to check out there website. Its kind
of tricky to get into. Try www.sickkids.on.ca
then go to family services. This is primarily a parents group but many survivors attend . write me any time.

sparcky
Posts: 17
Joined: May 2001

If any one wants to contact me {SPARKY) direct, my email is phillipm@attcanada.ca
Look forward to hearing from any childhood cancer survivor

slowdancer
Posts: 1
Joined: Oct 2001

Hello Sparcky, In 1963 i was diagnosed with a atrocytoma 3. Ihave some old hospital records but there poor copies.I do know that the tumor was inoperatable and recieved Colbat60 as a treatment. All my life I have had poor contration, a hearing loss,short tember ect. All the signs of ADD. I aam looking for any source of information or skills that others might have found usefull

sparcky
Posts: 17
Joined: May 2001

Hi Slowdancer, Do you go to a follow up clinic. If so they should have the information that you are looking for. Ironic I should say that because I am fed up with the clinic that I go to. I dont know were you are located but here in ontario you are legally entitled to copies of all your records, although I have had some opposition from the powers that be. They do have the right to charge you for the copies. Can be expensive. It has been a long strugle to get information and proper care. I will be giving a speach at a conference in November.
POGO is putting it on. You may get some information from them. The web site is www.pogo.on.ca.
I have however found that the best people to talk to are other survivors. If you can make it to a conference it is well worth the trip. Candlelighters put on excellent conferences. Also get the book Childhood Cancer Survivors as mentioned elsewere on this site. There is lots of information out there. The problem is getting it into the hands of the people who claim that they are looking after us and making them take our concerns seriously.
I can relate to your hearing loss. I also have the same problem. Loss in the left ear and ringing in theright. Also have problems with blurry double vision. This is common among brain tumor survivors. I was told that it is called meniers disease.
They dont know what to do for me. But at least its now taken seriously. I see someone outside the clinic for this . When I complained at the clinic I got "its old age you should not have lived this long" and runarounds. Hope that this helps. I do think that the conferences are your best bet. You find out more from the attendees than from the speakers in some cases. There is strength in numbers. Sooner or later the powers that be will no longer be able to look the other way. Our cause is growing. The next Candlelighters Conference is in Vancouver BC in 2003 Try to make it. I am sure that there will be others before.
Phil

tom_s
Posts: 19
Joined: Feb 2001

Hi Phil,
I saw your message and felt I had to reply. I had Leukaemia just over 11 years ago, when I was 9. At the beginning of August I sent a letter to my old doctor, in London (Maybe I should explain: I've lived for 14 years in the UK, and now live for the past 4 years in the Netherlands) asking for my hospital records. I was a bit dissappointed that for a country where health care is supposedly free that I still had to pay, but they have various rules, so the 300 or so pages were photocopied, sent to me here in NL for what, in comparison to what I've heard from others, was a fairly reasonable amount.
I must agree with you though, the most help I have had is by talking to other survivors.
Tom

sparcky
Posts: 17
Joined: May 2001

Hi Tom
Nice to hear from you. I was glad when I found this site. I just wish that there were more of us using it. This could be a very valuable resource to all of us. As I said before there is strength in numbers. If we all made an ongoing contribution then mabe we could finally get the answers we are looking for and the proper follow up we deserve.
Phil

dbdiem's picture
dbdiem
Posts: 1
Joined: Apr 2002

Hi my son is an 11 year survivor of medulloblastoma. Did you have radiation back then? He is having severe side affects from it and I would really like to know more info if you can.

sparcky
Posts: 17
Joined: May 2001

Hi
What type of side effects does he have.
Myself it is hearing loss, dizzyness and joint and bone pain. There are other side effects that other survivors have for this tumor but not all have the same effects. I did have radiation treatments after surgery.
I dont have some of the other late effects but if you let me no what your looking for I can talk to some of the other survivors of this tumor that I know that may. Also several members on this site including myself have found some answers in the book
Childhood Cancer Survivors. Keene, Hobbie and Ruccione. You should be able to find it at the library or from Candlelighters.

Erik123
Posts: 1
Joined: May 2003

Hello My name is Erik I am a 5 time Survivor of Medulloblastoma and just found out there is more in my head right behind the right ear. Yes, there is going to be some side affects form radiation. I just went to the ENT the other day up in John Hopkins and they told me that from all the radiation I have had my ear has grown in a way it will not drain properly There for I will need to go and get it drained every so often. Some other things are damge to the pituitary gland. Now I take med. so every thing is balanced. If you have any other ?? Email me at Easternfly@aol.com

bedoinbabe
Posts: 1
Joined: Jul 2005

my 20 yr old son is receiving treatment for medulloblastoma - he's 20 - if you're up to it, i'd like to know more about your tumor (location, size, excision, any spread, treatments) you can e me at bedoinbabe@yahoo.com

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

My tumor was inside the top right ventricle at the top of my spine. I don't know specifics about extraction, but I had surgery at the back of my neck. It didn't spread. I had operation, high intesity radiation and high intensity experimental chemotharapy.

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

Sorry it's been so long to respond. Yes, I had radiation. Order of things was operation, radiation and chemo. Radiation was high intensity. It caused a 2nd, benign tumor on my brain about 20 yrs later.
How is your son? what kind of side effects?
Again, sorry it's been so long for me to respond. I hope I can still help somehow.

Korena
Posts: 2
Joined: Apr 2003

Hi. I just wanted to talk to someone and hear their story, instead of telling my own. I hope you respond. Thank you.
Kory

frantik
Posts: 20
Joined: May 2002

I see that you are interested in connecting with other childhood cancer survivors. I had Wilm's Tumor in 1972 when I was 2 years old, and I had mets to my l. lung when I was three.

I've had lots of late effects. I have actually found that the community of long term survivors who have connected through ACOR's long-term survivors list has been the most helpful to me. For the first time in my life there are people who understand late medical and psychosocial effects of childhood cancer.

If you are interested in talking with me, please e-mail me. If you're interested in the ACOR list, check it out:
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

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

HI Kory. I'm sorry it's so long for me to respond. Have you checked out the chatroom here? First thing I tried here. Some great people there. Instant reponse, you don't have to wait for someone to reply.

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

I was just looking over this discussion again. I haven't been back in a long time. Not exactly a great thing to do when you start a discussion. Thanks for the info on Brain Child. I'll check it out.

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

Hi Sparky. Sorry it's taken me forever to reply. Or did I talk to you before? Drain Bamaged memory! How old were you when you were diagnosed. I was 10, about 2 ,months before my birtday.

shellbell81
Posts: 4
Joined: Oct 2011

Hi There (Sparky)

I write in hope that you still check for messages.

Im in need of some advice in regards of medulloblastoma.

I see it was a long time ago you were diagnosed. My 6yr old son was diagnosed May this year
and he is just under 2 weeks away from starting, what we call 'maintainance chemotherapy' here in the UK.

Im really just wondering if you mind chatting to me about your diagnosis, treatment, how you coped with it all, did you relapse and more importantly, were you a high risk category?

I have so many questions for everyone i can find whho has survived this terrible disease.
As much as my son is doing fantastic, and coped with everything so, so well, im still a nervous wreck. Im on edge all the time, convinced he is going to relapse, im driving myself mad! Is it a good sign that he has tolerated high dose chemo and radiotherapy twice a day?? Does this hopefuly mean he will beat it??

If you wouldnt mind getting back to me on your personal experience of all this, i would be so grateful.

Michelle.

annedora's picture
annedora
Posts: 4
Joined: May 2001

Hi! I am a survivor of childhood cancer. I had a Wilms Tumor in my left kidney when I was 4 years old. Now, I'm 25 and doing great except for a few late effects of chemo. I'm so glad I found this site, feel free to email me and chat!

keith
Posts: 3
Joined: Aug 2000

I am out here! I am 18, and was diagnosed with a pilosytic astrocytoma in 1999. Please email me to chat.
musicallyhis@mindspring.com

sparcky
Posts: 17
Joined: May 2001

Hi Christy
Im also a survivor of a brain tumor. I was diagnosed in 1966. One of the few from the 60's. I also know a few brain tumor survivors
up my way. We are all starting to go through some of the late effects. Our long term follow up clinics are no help. One thing that we find common is dizzyness. It comes and goes. Have you(or any one else) ever had this problem and has any one been able to do any thing for you?

crawfordc
Posts: 8
Joined: Feb 2001

how old were you when you were diagnosed? I was (, almost 10. This year will be 20 years since cancer diagnosis.

sparcky
Posts: 17
Joined: May 2001

Just before my fifth birthday. 1966

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

Sorry for long time to reply. I haven't been back to this in a long time. ( Well duh, obviously!) Not the greatest thing to do when you start a discussion. Possibly irresponsibility connected to the young child mentality that's stuck in my psyche somewhere.
Up your way? Where is that? I'm in northwestern lower Michigan.
I do get dizzy a good amount. I space out alot. So many things.
Write me at kitty.cat72@centurytel.com

noreenw
Posts: 1
Joined: Jul 2001

Hi, I'm 28 and was diagnosed with ovarian cancer in 1984.If you want to write, please do.

jennifer2000
Posts: 7
Joined: Nov 2000

hey that's practically me...I'm 29 and was diagnosed with ovarian cancer in 1984.

I also noticed that annedora mentioned carpal tunnel like symptoms being related to chemo...I can see that, I remember my arm being on fire with the IV and constantly complaining and swapping arms. I figured the Reynauds in my hands and feet was related to chemo, but you've made me think that my aching wrists and fingers isn't just from a job trapped in front of the computer.

PS. does anybody even check this string anymore or am I too late to join the party?

tom_s
Posts: 19
Joined: Feb 2001

Hi Jennifer
To my knowledge this string is still checked, (I've just checked it :-) ). As for being too late to join the party, seeing as, like the rest of us, you have had the thrills and spills of having had cancer at a young age, why shouldn't you post a reply?
take care
Tom

survivior
Posts: 2
Joined: Oct 2000

Hi, it looks like there are a few us us, I am a survivor of a Wilm's tumor (childhood kidney cancer), do you have long term effects from the treatments? I do. I would like to hear back! Luann

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