survivor of childhood cancer

12357

Comments

  • heart-2
    heart-2 Member Posts: 4
    #82
    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......

    I agree!
    With God all things are possible.
  • heart-2
    heart-2 Member Posts: 4
    #83
    Vickie78m said:

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

    Congratulations!

    Congratulations!
  • lawslegal
    lawslegal Member Posts: 38
    #84
    heart-2 said:

    Hi
    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

    My son is a survvivor
    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
  • mackenzie_b
    mackenzie_b Member Posts: 1
    #85
    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

    i know you posted this
    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
    jillebob Member Posts: 12 Member
    #86
    mackenzie_b said:

    i know you posted this
    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

    Long Term Neuroblastoma survivors..
    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...
  • Toshy
    Toshy Member Posts: 24
    #87
    30+ year (astrocytoma)
    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
    benwonderin Member Posts: 1
    #88
    Me too
    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.
  • redbeard0206
    redbeard0206 Member Posts: 10
    #89
    childhood cancer survivor
    Hi,
    I am a 49 year old survivor of Wilm's tumor. Was diagnosed at 6 years old.
  • dubc
    dubc Member Posts: 8
    #90
    Me too
    Im a 38 year Childhood Medulloblastoma survivor. I was two and a half. It's 38 years this month. April of 1973 I went into surgery as the Twin Towers in New York were completed. I've been wanting to get involved for a long time. I was thinking of volunteering at the hospital where I had my surgery or giving support/hope to others but life seemed to get in the way. Hope your doing well!
  • C_Reich
    C_Reich Member Posts: 10
    #91
    dubc said:

    Me too
    Im a 38 year Childhood Medulloblastoma survivor. I was two and a half. It's 38 years this month. April of 1973 I went into surgery as the Twin Towers in New York were completed. I've been wanting to get involved for a long time. I was thinking of volunteering at the hospital where I had my surgery or giving support/hope to others but life seemed to get in the way. Hope your doing well!

    Im not an "Adult" survivor
    Im not an "Adult" survivor of childhood cancer, but within this past 6 months, I have gone through alot over 2 months in the hospital,4 Surgeries, Intense chemotherapy, A Pulmonary Embolism and 2 other clots, A Hematoma, Pneumonia, Unexplained dizziness and syncope, Unexplained back/chest pain (23 days on morphine), and still some problems going on. But on march 11th, while i was still in the hospital I received a PET scan that had showed there was no sign of the cancer I was in remission, It was a great day in-spite of everything that was still happening and it just so happened to be my birthday. I spent another few weeks in the hospital after that, but in-spite of being in the hospital on my birthday, it was a pretty good birthday in all after receiving the results. A few days later my mediport was surgically removed and I went home a week later.
  • BMTBohoBabe
    BMTBohoBabe Member Posts: 9
    #92
    chae said:

    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.

    Me too
    Hi Chae, I was diagnosed with AML in 2004. I would love to talk to a fellow survivor.
  • hawktata63
    hawktata63 Member Posts: 2
    #93
    redbeard0206 said:

    childhood cancer survivor
    Hi,
    I am a 49 year old survivor of Wilm's tumor. Was diagnosed at 6 years old.

    childhood cancer survivor
    Hi,
    I am a 48 year old survivor of Wilm's tumor. Was diagnosed at 3 yrs old. Does anyone have information on late effects of colbalt and chemo(vincrstine). I have had my appendix, and gall bladder taken out and had hip resurfacing surgery 3 years ago due to no cartildge in the hip. This is the same side (right) that I was treated on. THe hip extensors muscles are atrophied from from the radiation I think. I have had intestinal problems off and on. Scoliosis and other things. Just wondering if anyone has more information that I could get.
  • aliciamp22
    aliciamp22 Member Posts: 5
    #94
    Hello,
    I am a Childhood
    Hello,
    I am a Childhood Survivor of ALL Leukemia. I was diagnosed when i was 15years old, 2 weeks from my birthday. That is one birthday present i could have done without. I am 22 years old now and i am coming up on my 4th year cancer free in July. I am still looking for someone that has been through what i have and around the same age. no one else can understand what you have been through unless they have gone through it too.
  • gc04
    gc04 Member Posts: 3
    #95
    babygurl84 said:

    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

    survivor childhood ALL too
    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!
  • Godsgirl3
    Godsgirl3 Member Posts: 1
    #96
    I am a Childhood Cancer Survivor
    I am 15 so I guess that wouldn't qualify me as an adult, but I was diagnosed with a brain tumor when I was three. I'm really glad I found this site. And I'm surprised that so many people have been effected by cancer.
  • lori17
    lori17 Member Posts: 2
    #97
    benwonderin said:

    Me too
    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.

    my daughter had medulloblastoma
    when she was four. I will tell her about this website. She is now twenty-six years old
  • mm91174
    mm91174 Member Posts: 6 Member
    #98
    JaWnM said:

    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

    3 time survivor
    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
  • mm91174
    mm91174 Member Posts: 6 Member
    #99
    babygurl84 said:

    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

    I AM LOOKING FOR ANYONE WHO
    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
  • shellbell81
    shellbell81 Member Posts: 4
    #100
    sparcky said:

    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.

    Medulloblastoma
    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.
  • shellbell81
    shellbell81 Member Posts: 4
    #101
    benwonderin said:

    Me too
    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.

    Medulloblastoma
    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.

Discussion Boards