survivor of childhood cancer

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  • rbarkan
    rbarkan Member Posts: 5
    #122
    Godsgirl3 said:

    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.

    Dear Godsgirl3
     
      you should

    Dear Godsgirl3

     

      you should go to curethekids.org - it is special for kids with brain tumors and their families - they can even help you pay for college!!!

  • Kelley Broyles
    Kelley Broyles Member Posts: 2
    #123
    mm91174 said:

    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

    3 time survivor

    Hello I was diagnosed in 1976, at the age of 14, I am 37 years post treatment and I have had all the side effects from chemo and radiation that you could have. I have lived with this for a long time and I understand all the frustrations that are there. You are not alone.

    I work every day but I cry frequently that it will go away. When I took treatments thought it would all be over,,,, how I feel is a constant reminder of what I went through. Don't get me wrong I am blessed that I am living and working but just sometime I want to not think about it.

  • Kelley Broyles
    Kelley Broyles Member Posts: 2
    #124
    Mobjack said:

    Thanks for the info!

    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.

    Survivor

    Hello

    I am a survivor of Rhabdomyosarcoma, I was diagnosed at age 14, 1976, I am almost 53 years old and I have lived with side effects for years. Sometimes I want to forget that I had to go through all this but I have daily reminders that are painful. I always told my parents that it was not the cancer it was the side effects taht I have to deal with.

    I do work everyday and I have since age 18, but now it is becoming more of a challenge and I feel sad. I have to consider surgeries that I really do not want but to improve my quailty of life I need to. I have severe lymphedema to my left lower extremity and I have had to have stent placements to keep the artieries open.

    Good luck!!

  • Sixdegrees
    Sixdegrees Member Posts: 1
    #125
    rbarkan said:

    Hi - I am a 33 year old

    Hi - I am a 33 year old medulloblastoma survivor diagnosed in 1989 - survivors our age are rare but we are out here!!!!

    31 year brain tumor survivor

    I was diagnosed with oligodendroglioma at age 3 and am 34 years old with no recurrence.

  • Leslie7220
    Leslie7220 Member Posts: 1
    #126
    Kelley Broyles said:

    3 time survivor

    Hello I was diagnosed in 1976, at the age of 14, I am 37 years post treatment and I have had all the side effects from chemo and radiation that you could have. I have lived with this for a long time and I understand all the frustrations that are there. You are not alone.

    I work every day but I cry frequently that it will go away. When I took treatments thought it would all be over,,,, how I feel is a constant reminder of what I went through. Don't get me wrong I am blessed that I am living and working but just sometime I want to not think about it.

    Totally get it

    Hi

    i had non Hodgkin's lymphoma in 1977 at age 14. Went thru radiation on my chest and 2 years of chemo.   I am currently 51 and just had a pacemaker put in. Have cardiomyopathy , had breast cancer, lung scarring, thyroid issues, etc... Just when I think I am out of the woods something else happens. I am grateful for many things.... Living... Is one of them.  But the late effects as I get older keep coming. I try so hard to lead a typical life and not let having had cancer define me but there are days when I am recovering from yet another bump in the road that I get so mad.... Please feel free to email vac las your email struck me as someone I can relate to.

  • Jojo543
    Jojo543 Member Posts: 1
    #127
    lbower said:

    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.

    Survivor myself

    hi there Ibower. I read your post and thought I'd say hi to you. I am a childhood survivor of rental Rhabdomyosarcoma. Mine was behind my left eye. I was diagnosed in '85 At age 5. I was given a 6 percent chance of survival and all of my treatments were experimental. I was in Newfoundland Canada but could not be treated here. As a result I had to go to Halifax NS. at the I.W.K. My treatments also had to come from Huston Texas.

       This was also a time before computers and the Internet.  If I can be of any help/comfort drop me a line :)

  • Stephaniep2112
    Stephaniep2112 Member Posts: 2
    #128
    My daughter is.  She was

    My daughter is.  She was diagnosed 2001 low gradd 2 fibrillary with no treatment recurrence 2007 no treatment and now possibly a 3rd surgery.

     

  • PhumlaK
    PhumlaK Member Posts: 1
    #129
    Hope keeps us going

    My 4 year old son has a brain stem glioma 1.8 cm x 2.5 cm located at his pons and medulla.  He was diagnosed when he was 1 year 3 months and was given 6 months to live.  He is currently in a process of helping fix his feet as they got affected and rendering him unable to walk.  Ours has been a journey of hope.  Steroids were not treating him good therefore i stopped giving him two years ago.  Because of the location and the fact that he was younger than two when diagnosed, he could not be operated on neither he could be given any other form of treatment other than prednosone.  My son is my little hero, a fighter who by God's grace has decided to live despite all the negative news from treating practitioners.  I am inspired and empowered as am reading most of the testimonies here...truly hope carries us on even when situations are not in our favout.  I am hopeful that one day my boy will too personally add his own encounter here just to give hope to someone going through similar. I just want to encourage anyone who may feel lost at this moment, to look up to God for grace.  Where human mind says ' it is impossible' God takes your over miles, He shows you that ' it is possible'.

  • Steven1980
    Steven1980 Member Posts: 2
    #130
    I'm Steven. I'm 37 and had a

    I'm Steven. I'm 37 and had a malignant brain tumour at age 12 and a meningioma at age 28. I have depression and anxiety which i take meds for. I've always had a strong weakness on the RHS of my body. Life has been difficult seeing that i could do things better 25 years ago but it is what it is

  • Steven1980
    Steven1980 Member Posts: 2
    edited October 2017 #131
    rbarkan said:

    Hi - I am a 33 year old

    Hi - I am a 33 year old medulloblastoma survivor diagnosed in 1989 - survivors our age are rare but we are out here!!!!

    Hey mate. I'm 37 and had a

    Hey mate. I'm 37 and had a medulloblastoma at age 12

  • thahn19
    thahn19 Member Posts: 4
    #132
    New childhood cancer survivor

    Hi I'm Toni, I was diagnosed about a year and a half ago with stage 3 lymphoma a couple weeks after my 17th birthday. I just finished my first semester in college this fall after having to put my education on hold for a year to finish treatment. Currently in remission, but recently I've been struggling a little psychologically with feeling alone/different. I'd really love to be able to talk to some people who have had similar experiences, or anyone who might have some advice about how to handle this weird survivor-stage I'm in...

  • fitwarriornyc
    fitwarriornyc Member Posts: 3
    edited January 2018 #133
    Me!

    I am a 30 year old cancer survivor who was diagnosed in 99' at age 12. I've started a YouTube channel to share my experience in hope that it will help anyone out there looking for support or comfort!

    https://www.youtube.com/channel/UCctFpg5kYMaVRBmaNvek06g

  • BurkittsSurvivor79
    BurkittsSurvivor79 Member Posts: 5
    #134
    Burkitts' Lymphoma Survivor 1983

    Looking for adult survivors of Burkitt's. I was stage IV in 1983, chemo and radition. Feeling like crap these days..Had thyroid cancer in 2006.

     

    Any other Burkitts' Survivors?

  • Longtermsurvivor 1
    Longtermsurvivor 1 Member Posts: 4 Member
    edited July 2021 #135
    Childhood Cancer Survivor 60 yr /D at age 3 (starting new)

    Hello my fellow survivor,

    I'm trying to start something new- SCCC Surprised Senior Citzens of childhood Cancer. 

     

     

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