survivor of childhood cancer

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  • swn1123
    swn1123 Member Posts: 3
    #42
    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!!
  • erd
    erd Member Posts: 1
    #43
    oneeye said:

    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!!

    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.
  • Aquagirl18
    Aquagirl18 Member Posts: 45
    #44
    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
  • lbower
    lbower Member Posts: 1
    #45
    oneeye said:

    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!!

    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
    markie774 Member Posts: 2
    #46
    oneeye said:

    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!!

    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
    AuthorUnknown Member Posts: 1,537 Member
    #47
    markie774 said:

    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
  • bedoinbabe
    bedoinbabe Member Posts: 1
    #48
    dbdiem said:

    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.

    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
  • angelagrace
    angelagrace Member Posts: 2
    #49
    tom_s said:

    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.

    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!
  • lilliam
    lilliam Member Posts: 2
    #50
    rory said:

    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

    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.
  • IreneG
    IreneG Member Posts: 3
    #51
    Hello, crawfordc... I, too, was diagnosed with a brain tumor... medullar blastoma... in 1980. I am now 38. Write to me so we chat.
  • Vickie78m
    Vickie78m Member Posts: 3
    #52
    Hi I had All when i was 8 and now Im 29 and doing fine I just celbrated my 6 month wedding anniversary
  • Chrissean
    Chrissean Member Posts: 2
    #53
    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.
  • codelv
    codelv Member Posts: 1
    #54
    Aquagirl18 said:

    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

    Guillermo
    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
  • babygurl84
    babygurl84 Member Posts: 8
    #55
    rory said:

    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

    survivor of childhood ALL (Leukemia)
    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
  • babygurl84
    babygurl84 Member Posts: 8
    #56
    sorcharose said:

    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

    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
    babygurl84 Member Posts: 8
    #57
    sorcharose said:

    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

    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
    babygurl84 Member Posts: 8
    #58
    Chrissean said:

    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.

    There Is Hope With GOD....
    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......
  • babygurl84
    babygurl84 Member Posts: 8
    #59
    Chrissean said:

    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.

    There Is Hope With GOD....
    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......
  • showell07
    showell07 Member Posts: 1
    #60
    Hey Everyone im a two time
    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
  • alaskana
    alaskana Member Posts: 2
    #61
    babygurl84 said:

    There Is Hope With GOD....
    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......

    Thanks for sharing
    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.

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