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Childhood ALL Survivor now 31yrs old

travelingteacher
Posts: 3
Joined: Jul 2011

Wondering if there is anyone out there who has been fortunate enough to survive and thrive after having ALL. I have been extremely fortunate in my life and am even married and expecting our first child aka ( alien nugget) in September. As lucky as I have been I still wonder what will be around the corner. I asked my OBGYN what the risk is that I might pass on the ALL since it is a blood disease? She said that the risks are low, but I am pretty sure that there are very little studies on this because I am part of the first group of survivors from the early 80's.
At age 3 1/2 I was diagnosed with ALL and I was pretty sick and hospitalized immediately after the doctor looked at me. I was fortunate in the protocol of drugs they put me on and that the cranial radiation did not have any severe effects. Only one is that I am about 6in shorter then everyone else in my family. Nothing that kept me from living my life.
I feel guilty sometimes when I read the side effects others have had and I am grateful for everything I have been given.

ruby2012
Posts: 5
Joined: Mar 2012

you sound alot like me. I was fortunate to survive ALL as well. I was diagnosed at age 4. that was in the late 80's. I am 26 now and doing wonderful. I just got merried 2 years ago. I would like to start a family as well. I went through years and years of chemo, bone marrow biopsies, and spinal taps. it was a pretty rough childhood. But when I got into high school things changed and I basically began a new life.

nettecg
Posts: 9
Joined: Jul 2012

I am also 31 and was diganose with Leukemia in the fall of 1983. A month and a half before my 3rd birthday. I also had radiation to my brain because of the protocol. Though they knew it would give me a learning disability. I have trouble comprehending basic math and have a short term memory problem. These are the side effects that were confirmed by main doctors. Maybe around six years ago I started to experience pain in my feet. A couple years latter a local oncholgist thought it was risidual nerve damage due to the cancer treatment I had. I had always had muscle tritches and occational pain in my shoulders but it wasn't until my feet started to hurt that I really looked into nerver damage.
As for getting through life, it has been especially hard/ School was torture not only from classmates but teachers being sceptical about my learning disability. As for school I have an associates in Interior Desidn which I love. However given the market I've never gotten a job specific to it. So I've jumped from several part time jobs since I had gotten my degree in 2006 I think it was.
Though I started to sell some things on etsy last year. And have been a vendor at the local farmers market starting full time this years season. So it's not all bad, just wish when someone hires me it will be more than part time or temorary.

If you would like to chat you can find my facebook page for Childhood cancer survivors here

https://www.facebook.com/pages/Childhood-Cancer-Survivors/167166323375529

I don't check my email much so this will work best ;)

I've also attended an Iowa based camp for kids with cancer and have been a vo;unteer since 2001

https://www.facebook.com/ChildrensCancerConnection

They also have a wonderful survivorship program with an annual conference and weekend camp.

https://www.facebook.com/SurvivorshipConnection

I want answers's picture
I want answers
Posts: 8
Joined: Oct 2012

My really good friend just told me, when he was around 14 he found out he had leukemia.... He did chemo for a year or more. And after they needed to do a BMT. His brother was a perfect match. As i said this was all when he was 14-16 years old. Now he is 18 and he is fine. The BMT was successful. But I'm just wondering if everything was successful, what's his life expentancy? This is what I read on google, and it scared me so much
"Patients who have survived for at least 5 years after hematopoietic cell transplantation without recurrence of the original disease have a high probability of surviving for an additional 15 years, but life expectancy is not fully restored. Further effort is needed to reduce the burden of disease and treatment-related complications in this population"

Does THIS MEAN PEOPLE CAN ONLY LIVE 20 OR LESS YEARS AFTER A BMT???? PLEASE SOMEONE ANSWER ME, WITH A TRUTH.

Maria_ALL's picture
Maria_ALL
Posts: 2
Joined: Jan 2014

Looks like i've found my age group here. I was diagnosed in 1982 with b-cell ALL only 4 months old. After three years of chemo i was in remission and have been since. I've been lucky too survive with small sideeffects since i only had chemotheorapy.

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