Childhood ALL Survivor now 31yrs old

travelingteacher
travelingteacher Member Posts: 3 Member
edited November 12 in Leukemia #1
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.

Comments

  • ruby2012
    ruby2012 Member Posts: 5
    we should talk
    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
    nettecg Member Posts: 8
    Felt like I was reading something based on me!
    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
    I want answers Member Posts: 8
    nettecg said:

    Felt like I was reading something based on me!
    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

    Can anyone read my blog ,and answer me if you know.
    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
    Maria_ALL Member Posts: 2
    Hello

    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.

  • RosenlyPinkTea
    RosenlyPinkTea Member Posts: 3
    edited July 2018 #6
    Welcome Back

    I am 27 years old and 13 years cancer free from MDS childhood cancer I had at the age of 12. I have new health problems that followed my chemo therapy treatment and new ones still arriving. I too worry about passing this to my future child, even though I am the 1st in my family to have it. I am going to see a Genetisit on top of other doctors I already see (endo, gyno, and specalist for hoping to have a child). I noticed there are causes to getting ALL or MDS (Leukemia ) and your genetics is one, so maybe go and see a genetisit, it might help you find more answeres. I am hoping it will for me. If not I will be okay adopting. 

  • jaceliz
    jaceliz Member Posts: 3
    46 year Survivor of ALL

    Hello everyone,

    I was diagnosed with ALL in 1973 (age 11) and had five years of chemo.  I thought you might be happy to know that even though I was told I would never have children, or they just didn't know if it was possible, I have two and am the grandmother to two beautiful twin girls.  Even though I went to a high-risk OBGYN (my choice) I had normal pregnancies and my kids were very healthy. 

    I was in a test group and being young and stupid I stopped going for appointments when I was about 19 years old.  I was tired of being different and tired of traveling 100 miles one way to visit the clinic I was treated at.  Please, please, for your continued health and peace of mind, keep getting those check ups with your oncologists.  I haven't had any relapses (knock on wood) and have a relatively healthy life.  I have some health issues (I mean I am 57 years old) but I don't think any of those are related to my cancer or my treatment.  But then again, I really don't know because I havent' been able to find too much info on the type of treatment I had.  Most of the doctors are deceased and I was told records that old aren't around anymore or aren't that easily accessible.

    Wishing all of you continued good health and I hope what I've written has given you some positive feelings about your future.

  • Brucecav
    Brucecav Member Posts: 5 Member
    WOW so young, I was

    WOW so young, I was diagnoised at 68 years old now 71 but still under treatment. Glad to read you are all still alive and your ALL has not came back.. My ALL is Philadelphia Positive with a rare varent.

  • satenama
    satenama Member Posts: 8 *

    I don't know if anything I have to say will benefit you, or ease your mind, but at the least I offer you my support. I hope you've had lots of kiddos by now.

    I was diagnosed at age 19, and have 28 years post treatment for ALL. The military exposed me to toxins (similar to the Camp Lejeune lawsuit), so my cancer was not in my genes (they tested me). I take it from your fears of inheritance that you were tested positive for the genetic mutation? If that genetic testing was negative for you, I hope you understand you cannot pass Leaukemia to your unborn children.

    I'm so sorry for this lingering worry for you. I was always just so grateful to be able to get pregnant with my children years later after 3.5 years of chemo. I always expected the chemo to have robbed me of egg fertility. This may not be helpful to you, but have you ever considered asking your parents if they would have chosen to not get pregnant with you if they had known then you would be subjected to ALL as a kid? As a mom myself, and a Leukemia survivor, I suspect their answer would be similar to my own "God forgive me, but yes. I would always choose for the world to be blessed with you." In your position, my true question would be "how would I ever reconcile feeling responsible if this horror befalls my own child?" What a truly unfair quandary you've burdened yourself with, but to be frank, every parent feels responsible at every tragedy that befalls their kids. That is inescapable and comes with the job. I read somewhere "To live is to suffer." We can't save our kids from their Life's tragedies, no more than we could have saved ourselves from Leukemia. So that must not be the point of having kids at all. But I think we can armour them with the survival skills we learned from going through such a horrific experience (you know the ones).

    I, for one, hope you are blessed with the children of your heart's desire, because as a survivor you are special qualified to feel deeply and emphatically connect with the personal lives of your children. You deserve joy after the torture, fear, and uncertainies I know personally you have experienced (and still go through) from Leukemia. Blessings to you and your family.

  • satenama
    satenama Member Posts: 8 *

    Hi,

    Yeah, ALL at age 19 and I have memory loss, deficits in sequence recall (can't remember a phone # to save my life), and aphasia, which is difficulty with word recall (all from chemo Methotrexate to my brain/spinal fluid), and foot drop and years later have developed severe foot nerve pain/numbness (both from chemo Vincristine). I feel so protective of your younger self as I read how you were not being believed and supported through school. So wrong and ignorant of those teachers. Big hugs to you, if you ever see my reply.

  • satenama
    satenama Member Posts: 8 *

    I think 15 years post the typical first 5 year provisional window is due to a lack of longitudinal research studies following survivors beyond 20+ years. However, it's all reality to know that some unspecified number of years of life expectancy have been sacrificed by the brutal nature of the treatment, but NO ONE can predict your friend's life expectancy outside of God. I saw a comment on here from someone who had a BMT in 1986, so...

    I didn't have a BMT for my ALLeukemia, but I did have 3.5 years of chemo, came back from the brink of death, and I still carry an Ommaya Reservoir shunt inside my brain. I'm a 28 year survivor.

    It's been 10years since your fearful post. Is your friend still living? I do so very hope so, and if not, I'm sorry. Sometimes I wonder why I survived while so many others did not along the way. Going through the horror of it, I can tell you a part of you dies, regardless. If your friend still lives, I encourage you to give him a call.

  • Jeepguy654
    Jeepguy654 Member Posts: 5 Member

    I'm 47 year old ALL Leukemia survivor from the 1970s. I have been looking for survivors from around then. I have several health issues from treatment. My story is far from a happy one. It's good to know there are other survivors.

  • Spark_el
    Spark_el Member Posts: 2 Member

    Hello! I have tried for years to find someone similar to my son's case. Jake is 44 and was disgnosed in 1980 with ALL, null cell. He was put on chemo for abt 3 years. He had the radiation to the brain and the Methotrexate in his spinal taps. Also the 6MP, antibiotics and others I don't recall at the moment. I can't say he tolerated it well as he was 22 months old at the time and was scared to death of needles and of course much worse. He did actually gain weight due I'm sure to the prednisone. 3 months past chemo, he relapsed in his testicles and began an intensive treatment plan for one more year. This time with hospital infused chemo quite often in the hospital. He also had total radiation to testicles which rendered him sterile and added to a host of additional problems in puberty through today.

    He has had some learning problems when entering school but never diagnosed with that. He has had even more increasing mental issues in the past 4 years including social problems, anxiety and depression that have worsened. Very low self esteem and many other problems. I was surprised to find articles that have talked of increasing problems even 40 or more years later. Unfortunately his doctors and psych doctors do not know anything abt problems for long term survivors back then.

    I would welcome any conversation with ALL survivors. Or any survivors from way long ago.

    Thank you,

    Bonnie in Wisconsin