Cancer Survivors Network

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.

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

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.

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

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!

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

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

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.

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

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

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

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.

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

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

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

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

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

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.

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.

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

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

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.

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.

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

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

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.

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.

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.

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

Just before my fifth birthday. 1966

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

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?

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

What have been your long term effects?

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.

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.

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.

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.

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

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

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

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

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

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

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

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...

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

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

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

Congratulations!

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......

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.

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.

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

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......

With God all things are possible.

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

WHAT TYPE OF CANCER DID U HAVE

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