ACUTE LEUKEMIA SURVIVOR

2

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  • srisko
    srisko Member Posts: 33
    #22
    babygurl84 said:

    Side Effects from treatment...
    Hi my name is kristi, I had ALL at the age of 20 months old and underwent treatment till i was about 5 yrs old. Ive been in remission for about 18 yrs. Im 24 now. But over the past 3-4 yrs. mostly i have noticed cliches here and there mentally,in my social life and in the work environment that are most likely long term side effects from the treatment that have begin to become more of an issue the older i get. Has any else experienced the same? If so are there test to determine these disabilities or treatment to fix them?
    Kristi

    Hi I'm Sarah and I ALL when
    Hi I'm Sarah and I ALL when I was five years old and I under went treatment until I was nine. I've also been in remission for 18 years and I'm turing 24 this October. I have learning disabilities from the chemo and as result of that I went to school for kids with learning disabilites from 7th grade until I graduated from high school. I also have problems socially as well. I'm in my last year of college and I love that fact my friends don't care that I don't drink very much but sometimes I do feel left out. I also have issues with boyfriends as in I've never had one, I've never even been on a date or been kissed by a guy. I got tested for my LDs when I was a kid so I'm not really sure how to go about doing that for adults. I would say call your hospital and ask for a diganostic test other than that I'm not sure. I'm here if you ever want to talk,
    Sarah
  • alaskana
    alaskana Member Posts: 2
    #23
    Vickie78m said:

    I had ALL when I was 8 then again at 12 I am now 29

    I have a question...
    I have a child who is 7 he was diagnosed with ALL at age 4. He is now off chemotherapy since May. I am wondering how long it takes for the medicine side effects to truly leave the body? It seems he still fatigues easily. I am wondering how it was for you? He did not receive radiation, but chemotherapy.
    It seems there is a lot of information for what happens during chemotherapy, but i'm wondering about post chemotherapy?
  • rohitsingh2335
    rohitsingh2335 Member Posts: 2 Member
    #24
    hi i am leukemia
    hi i am leukemia survivor...are you also a caner survivor?
  • rohitsingh2335
    rohitsingh2335 Member Posts: 2 Member
    #25
    hi i am leukemia
    hi i am leukemia survivor...are you also a caner survivor?
  • umaru87
    umaru87 Member Posts: 3
    #26
    rohitsingh2335 said:

    hi i am leukemia
    hi i am leukemia survivor...are you also a caner survivor?

    AML 1998 (my age now 25)
    Hey rohitsingh,
    im also a AML leukemia cancer survivor at 12 year old (1998)and now 25....
    So how are u ?
    when did u get leukemia and how your progress?
  • umaru87
    umaru87 Member Posts: 3
    #27
    rohitsingh2335 said:

    hi i am leukemia
    hi i am leukemia survivor...are you also a caner survivor?

    TO AML SURVIVOR WHO ALREADY MARRIED, NEED SOME ADVISED
    Somebody here who had AML leukemia and had already married?
    Need some help, because i dont know what to do if test show me im infertilized because of the chemo,drug and other....
    im already in love with someone and planing to get married.i cannot bare to say to my partner about this,because she love to have children and baby in the future... i dont know what to do if she leave me because of my late history... i really appreciated who could give me suggestion or good solution for this problem...
    From : AML survivor 1998(12year old) and now 25 year
  • genechick
    genechick Member Posts: 2 Member
    #28
    I am the oldest ALL leukemia survivor.

    Hello Britrice! My name is Karen and I am the oldest survivor of (ALL) The doctor's found out I had it in 1963. I just turned 62 years old on December 29, 2012. I am writing this because there is HOPE! This disease effects the mind as well as the body. I know that it is not easy to stay positive. You will become discouraged but do not give up! My references are: .The Emperor of All Maladies written by Dr. Siddhartha Mukherjee. I am known as "Ella" in the book. Also, a new documentary that just came out, "The Enemy Within" which I star in...
    Encouragment for ALL! Keep the HOPE alive!! I am currently writing a book on survival. If anyone was a patient of Dana Farber, Please let me know at: genechick@gmail.com God Bless!

  • arizonaspirit10
    arizonaspirit10 Member Posts: 2
    #29
    ALL

    Hey, i'm 20 years old, and was diagnosed with ALL at age 15! message me if anyone would like with similar illness :)

  • Chelsea's Mom
    Chelsea's Mom Member Posts: 1
    #30
    babygurl84 said:

    Side Effects from treatment...
    Hi my name is kristi, I had ALL at the age of 20 months old and underwent treatment till i was about 5 yrs old. Ive been in remission for about 18 yrs. Im 24 now. But over the past 3-4 yrs. mostly i have noticed cliches here and there mentally,in my social life and in the work environment that are most likely long term side effects from the treatment that have begin to become more of an issue the older i get. Has any else experienced the same? If so are there test to determine these disabilities or treatment to fix them?
    Kristi

    lasting effects

    Hi Kristi,

     

    My daughter Chelsea was diagnosed with ALL at age 7. She is now 20. I have noticed some effects in her which I attribute to her treatments.  I am concerned for her now, because she has some gynochological issues that she has been getting tests for.  For example, she gets her period for sometimes 2 months straight! She also is dealing with PTSD issues related to her cancer diagnosis.  From what I have researched, some of these are bound to happen, as certain drugs given during treatment are the cause.

     

    Please keep fighting the lasting effects just like you did the cancer! 

     

    Blessings,

     

    Chelsea's Mom

  • ellie88
    ellie88 Member Posts: 2
    #31
    sorcharose said:

    Hi, I had ALL at the age of 3 and a half. I'm 25 now. That makes me cured for about 19 years. If you are interested in a chat (or have any questions), please feel free to drop me a line on the C.S.N. email sight, sorcharose

    same as me! i'm new to this

    same as me! i'm new to this site, anyone wants to talk or whatever, msg me x

  • Neeha
    Neeha Member Posts: 1
    #32
    1984to1994 said:

    Diagnosed at 2 and 8 with ALL. I am now 22.
    Ken
    shadow2137@hotmail.com

    Info PLease

    Hi Ken - My son was 5 when he was diagnosed with ALL and after his therapy he relapseda again 2 weeks back. can I please know how you were treated - was it a chemo when you replased or was it a BMT. How was it after replase....Please share your thoughts.

    I really look forward to your reply back,

     

    best,

    Neeha.

  • llwright
    llwright Member Posts: 31
    #33
    AML

    my daughter was diagnosed with AML at the age of 2yrs old. she went through treatments and an autologous bone marrow transplant just before her third birthday. she is now 24 and had her first child anna who just turned a year old. she was told it  was unlikely that she would have children because of the high dose chemo. she survived with not one long term effect. that was 22 years ago.

  • phrase53115
    phrase53115 Member Posts: 2
    #34
    HI

    Hi i am brittany i got  ALL at the  age of 3.. I was wondering if  any one has survior gulit.... i recently just  lost my best friend  to cancer and have been feeling survior gulit...

     

  • Nadz
    Nadz Member Posts: 1
    edited October 2016 #35
    SwimCoop said:

    britrice I've been a survivor of luekemia since 1995 if you ever want to talk let me know.

    Hello how r u. I would like

    Hello how r u. I would like to know ur story plz. My son is in remission 

  • xxunknownxx
    xxunknownxx Member Posts: 1
    edited January 2017 #36
    sorcharose said:

    Hi, I had ALL at the age of 3 and a half. I'm 25 now. That makes me cured for about 19 years. If you are interested in a chat (or have any questions), please feel free to drop me a line on the C.S.N. email sight, sorcharose

    same story

    i've been diagnosed 3 and a half years old with ALL, now i'm 16 years old a grade 10 student, i'll just ask 1 question, do you have your own family now? reply asap

  • Amlsurvivor81
    Amlsurvivor81 Member Posts: 2
    edited May 2017 #37
    lindazame said:

    Hi Britrice,

    In 1998 I founded the long term survivors discussion list at ACOR. We have over 300 members including some of the leading physicians who work with patients with late effects. You can join our group by going to www.acor.org and clicking on mailing lists and joining the LTS group. If you have problems with that you can write to me directly (zame@earthlink.net)
    Healing thoughts,
    Linda Zame

    Leukemia survivors

    Hello,

    My name is Paul...my username on this site is amlsurvivor81, I have set up a Twitter handle (@Amlsurvivor81) for Cancer support blogs from my experience with Aml. I had leukemia @ 2 years old and was in remission at age 5.  I was told back then I had a 20% chance to beat my cancer.  I am almost 36 now...(on may 18th) I be cancer free for 30/31 years now.  So blessed to have been treated at Hackensack UMH and began treatments at Mt Sinai , NY by Dr Steele, Dr Harris, Dr Weiner and all the nurses and staff.  After I was in my teens I was welcomed into the Cure and Beyond program at Hackensack UMH, and still to this day they are happy to see me!

  • Amlsurvivor81
    Amlsurvivor81 Member Posts: 2
    #38
    erica10 said:

    hi britrice. i'm erica and i have acute lymphotic leukemia. I'm usually on the chat you should try to go on there sometime. If not that's cool too. I'll go on a check. go to the personal webpages on this site i'm erica10. you can leave me a message i'll write back. well got to go. See ya!

    Hi Erica,

    Hi Erica,

    If you need any support, I'm here for you and anyone else who needs to vent. I also have a Twitter account to spread support for us at @amlsurvivor81 feel free to tweet me there to get a quicker response.. Good luck on your treatments, you will get through this, just stay positive 

  • TCD_ALL_NJ
    TCD_ALL_NJ Member Posts: 3
    edited August 2017 #39
    Cobalt radiation to skull and spine (CNS) at age 6

    I want to try to stay positive but I have a lot of problems. Very, Very discouraged. No real quality of life. I Want Jesus to give me a NEW brain and CNS. :(

    Does anyone know of a good neurologist and or oncologist in Ocean/Monmouth county area (state of NJ) who specializes in late term issues. Please? Thank you for any help you can provide.

    I had Cobalt radiation to skull and spine (CNS) at age 6 daily for over a month. I had methotrexate injected into my spine as a final treatment (Chemotherapy of Methotrexate, Prednisone and Vincristine. I am 51 years old and want some peace of mind.

  • Welshboy222
    Welshboy222 Member Posts: 1
    #40
    erica10 said:

    hi britrice. i'm erica and i have acute lymphotic leukemia. I'm usually on the chat you should try to go on there sometime. If not that's cool too. I'll go on a check. go to the personal webpages on this site i'm erica10. you can leave me a message i'll write back. well got to go. See ya!

    ALL survived

    Hi all, just found this site, I was diagnosed in 1984 with ALL at the age of 14, you can do the maths.  I’m British, and had my treatment in england but it was part of a joint study with the USA and I visited LA during my treatmen. If I can help or chat with anyone who needs to have a shoulder to lean on then please get in touch. I was at the very start of the  success found in the 80s and know treatment is very different now as it should be. All the best to you all and keep fightin.

  • jeepgirl76
    jeepgirl76 Member Posts: 4 Member
    edited October 2018 #41
    Amlsurvivor81 said:

    Leukemia survivors

    Hello,

    My name is Paul...my username on this site is amlsurvivor81, I have set up a Twitter handle (@Amlsurvivor81) for Cancer support blogs from my experience with Aml. I had leukemia @ 2 years old and was in remission at age 5.  I was told back then I had a 20% chance to beat my cancer.  I am almost 36 now...(on may 18th) I be cancer free for 30/31 years now.  So blessed to have been treated at Hackensack UMH and began treatments at Mt Sinai , NY by Dr Steele, Dr Harris, Dr Weiner and all the nurses and staff.  After I was in my teens I was welcomed into the Cure and Beyond program at Hackensack UMH, and still to this day they are happy to see me!

    Hi Pail, my name is Rebcca. I

    Hi Pail, my name is Rebcca. I was diagnosed with ALL November 1988.

    I also went to cure and beyond in Hackensack, my Dr. Was Dr. halpern. I was treated at the Valerie Center in Summit, NJ.

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