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ACUTE LEUKEMIA SURVIVOR

britrice's picture
britrice
Posts: 3
Joined: Dec 2003

I WANTED TO BE IN CONTACT WITH SOMEBODY WHO HAS HAD THE SAME EXPIRENCE OF ACUTE LEUKEMIA AND SIMILAR TREATMENTS.

lindazame
Posts: 46
Joined: Jan 2002

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

erica10
Posts: 30
Joined: Jul 2003

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!

sorcharose
Posts: 17
Joined: Oct 2002

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

VT101
Posts: 1
Joined: Feb 2004

Hi, I also had childhood Leukemia. Mine started at 2 and a have years old till I was about 7 or 8. I'm now 30. so that makes about 22 years now. its a tough fight when your that young. take care and many happy years ahead.

Donnie
Posts: 2
Joined: Jan 2004

I also had ALL as a small child. 18 months old. I'm 26 now., so that makes about 24 years for me. I clearly remmember the last time I went for a bone marrow check when I was probably about 4 or 5. Don't remember much beyond that. Dr. Gross (his real name :) haha) told me he never wanted to see me again :) 24 years later, and I have only the most minor side effects (and none of them are directly due to the leukemia itself). Feel free to contact me anytime.

Donnie
Posts: 2
Joined: Jan 2004

By the way, I'm Donnie :)

nicolebear27
Posts: 6
Joined: May 2005

hi i had ALL when i was 4 and have been in remission since age 7 , i am trying to meet people who want to share their story's.

ellie88
Posts: 2
Joined: May 2013

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

SwimCoop's picture
SwimCoop
Posts: 17
Joined: Apr 2003

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

haidamaid
Posts: 1
Joined: Apr 2004

Hi, I also have ALL, am 55 years. I was dignosted 8/13/2001. Right now I am in remission, but have to take cemotheropy for two years. And if I make that than I will need a bone marrow transplant.

acsteen4life's picture
acsteen4life
Posts: 3
Joined: Jan 2005

hi my name is Vanessa, and i had all when i was 9 and then again at 12, now im 15 in march so i know how you all feel! i had a bone marro transplant and have missed almost 4 years of school in my short life. im now in high school and all is well, if anyone wants to talk please dont be afried to contact me. i may be young but my knowledge goes way beyond my age.i hope someone who needs this information see's this. and just remember everyone, live strong, wear yellow, and theres know such thing as its too late

1984to1994
Posts: 14
Joined: Oct 2004

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

nicolebear27
Posts: 6
Joined: May 2005

hi i am 24 and was diagnosed with ALL when i was 4 and i have been in remission for since age 7. i wanted to talk to and meet others who share trhe same experiences with me. my whole life i have been in denial about my childhood and now i am ready to face it. if anyone wants to share their story with me i would really appreciate it.

AuthorUnknown
Posts: 1563
Joined: May 2006

Hello,

If you find someone you would like to contact, you can send them a CSN internal email. To do this, click on the envelope icon beneath their original email. You can also search the personal web pages by clicking on the link on the left hand side of the page.

Take care and be well,

Dana
CSN Dana

Vickie78m's picture
Vickie78m
Posts: 3
Joined: May 2007

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

alaskana
Posts: 2
Joined: Nov 2008

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?

julia456
Posts: 1
Joined: Aug 2005

Hi,
I'm 25. I had ALL at age 6. I never wanted to speak about it until I was 19. And suddenly, at 19, I became very interested by the subject and started to want to know everything about it. I'd very much like to speak about it with others who had leukaemia in their childhood.
I don't have bad memories about all that.
Julia.
PS: I tried clicking on the envelope icon, to send e-mails to those who have already left a message here, but I didn't get anywhere.

AuthorUnknown
Posts: 1563
Joined: May 2006

Dear Julia,

I am sorry to hear you had a difficult time with the email icon. I have tested it out and it appears to be functioning correctly. You may want to try it again. If you are still having problems, you may want to try contacting the individuals directly through the CSN email system and feel free to contact us at webmaster@acscsn.org.

Take care and be well,

Dana
CSN Dana

Neeha
Posts: 1
Joined: Jun 2013

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.

marysn1
Posts: 2
Joined: Apr 2005

Hi, I am a student nurse in Lincoln Nebraska. I am working on a project for school and I need to interview someone who has leukemia. This can be done through email or a chat room to maintain confidentiality. Would you be willing to help me out?

nicolebear27
Posts: 6
Joined: May 2005

i had leukemia when i was a child if you still need someone to intervies i would be willing

babygurl84
Posts: 8
Joined: Oct 2003

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

srisko's picture
srisko
Posts: 34
Joined: Apr 2008

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

Chelsea's Mom
Posts: 1
Joined: Mar 2013

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

rohitsingh2335
Posts: 2
Joined: Nov 2011

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

rohitsingh2335
Posts: 2
Joined: Nov 2011

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

umaru87
Posts: 3
Joined: Oct 2012

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
Posts: 3
Joined: Oct 2012

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's picture
genechick
Posts: 3
Joined: Oct 2012

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's picture
arizonaspirit10
Posts: 2
Joined: Feb 2013

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

llwright
Posts: 31
Joined: Jul 2013

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's picture
phrase53115
Posts: 2
Joined: Sep 2013

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...

 

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