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Young adult survivors of ALL

kerrie
Posts: 12
Joined: Feb 2002

I was diagnosed with ALL when I was three years old. I received two and a half years of chemo and radiation. I also had many bone marrow and spinal tap tests. I was wondering if there was anyone who had any simmilar experiences and wanted to talk. I have been trying to find other survivors to talk to. I would love to hear from anyone who wants to talk.

writernfighter
Posts: 8
Joined: Feb 2008

Hi! I too am an ALL survivor (twice). I did chemo the first time (at 4 years old) and chemo/radiation/BMT the second (at 7-8 years old). I'm always good for a talk, especially since ALL survivors from my era (late 80s-early 90s) are sometimes hard to find.

And spinal taps? Yeah, if I never have to have another one of those, it'll be too soon. :P

kerrie
Posts: 12
Joined: Feb 2002

Hi, Thank you for replying to my post. It's nice to hear from other Young Adult ALL surviviors. Do you remember much about your treatments? There are a lot of things I still remember about different treatments. To this day I have a sensetivity to the smell of radiation and tylenol. Did you develop any disabilities? When I was younger in school I had spelling and math disabilities. I also had cognitive delays. I was diagnosed in 2006 with Rehumatoid Arthritis and am now in PT. Anyways, on to other up beat things. Where are you from? Are you in or working? I am from New York.(Orange County) I was working as a teacher's Aide at a special Ed school. I had to quit because my arthritis became too severe for me to work. I hope to return soon. Hope to hear from you.
Kerrie

writernfighter
Posts: 8
Joined: Feb 2008

See, now, that's funny, because I'm from Orange County, California!

I do remember a lot about treatment, and the smell of certain cleaning chemicals sends me into a cold sweat. I've always done okay in school, but I've been having increased concentration and focus issues in the last five or six years or so. This is what concerns me the most, because it hasn't been evaluated or treated yet. Most of my other problems are orthopedic or endocrine in nature and are under fairly close observation. Joint and bone pain, osteopenia/osteoporosis, arthritic joint changes, and a thyroid nodule top the list right now. But I keep a (twisted) sense of humor about it all (I've even named the thyroid nodule). I'm in grad school right now and up to my elbows in literature, and I work part-time as a tutor in one of the departments I was in as an undergrad. I think that's it. Oh, and I'm a part of Colleges Against Cancer at my university as Survivorship Chair. Mostly I make noise on campus, trying to get better support for people going through cancer treament and for cancer survivors.

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

Hey,
I had ALL as well, when I was five in 1990 and I was treated in Boston. I received three years of chemo, predinsone, a bunch of other meds, 6 bone marrow tests, 200 blood tests, and 20 spinal taps, yuck! The chemo left me with three learing disabilities and fine motor skill dysfunction but I got some wicked awesome surgical scars out of the deal! I'm 23 and finishing college soon. Relationships are the hardest things I have to deal with now but I really want to go to grad school for American Sign Language so I can interpret for deaf children in the hospitals who have cancer. Hope to hear from some of you soon,
Sarah

writernfighter
Posts: 8
Joined: Feb 2008

Hiya,

Can I ask you about your long-term effects? I'm finding that I'm having a tough time with orthopedic issues (thank you, prednisone), and I'm noticing that I'm having more problems with concentration and attention in the classroom. Is this similar to your effects? Or have your effects been something way different? I'm having trouble getting answers because my current oncologist doesn't know how to handle young adult survivors.

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

Hi Writernfighter,
my long term effects of chemo is that I have three learning disabilites and fine-motor skill dysfunction and then I have back problems from the spinal taps. It affects every survivor differently.

SaschiesMum's picture
SaschiesMum
Posts: 3
Joined: Nov 2004

I am 33 years old.. I was dx'd with ALL in summer 1981. I remember loosing my hair, the ulcerated mouth and oesophagus and not being able to eat due to side effects of chemo.
I fought from 81-85. They say if I had fell out of remission for the 4th time, that I would have to have a BMT (BONE marrow tx).
I have had other cancer diagnos's.. uterine leiomyosarcoma, ovarian and skin.
I am high IQ, so it did not impend my IQ like I have seen it do to others.
I do have other major medical issues caused by the chemo and rads.. cardiomyopathy and congestive heart failure to name 2.
I have osteoparosis due to the prednisone and current pain medications (found out that I have some really nasty spinal birth defects that no one knew about until I broke L5/S1 facet joint bones)
I was diagnosed when I was 6.
I do remember them having much difficulty with my diabetes durring that time with all the chemotherapy regimins that I was on (doxyrubicin, mtx, prednisone, vincristine, et al)
There are a exteam few amount of survivors of ALL from my era of tx. Since it was early-mid 80's when it had a 50/50 survival rate at best (I had heard it was as low as 30%).
Because of all my medical issues, cancer and the tx encluded, I HATE hospitals, and doctors office's too.
I am currently in remission x 5.5 months from basosquamous cell carcinoma (basel cell and squamous cell carcinoma aka non-melanoma type skin cancer).
Because of all the Ca tx that I have had, I require a port-a-cath for all bloods and fluids.
I am concidered critically ill due to medical issues, and some are caused by my Ca tx.
I am a MD/PhD by education, but not able to work due to medical issues, and the fact that I have little to zero immune system left (23%) due to CVID and Selective IgA def. due to genetics.. which leaves me at extream high risk of Ca.
I also have the BRCA1 and BRCA2 mutations (breast/ovarian cancer gene).

rossgipson's picture
rossgipson
Posts: 26
Joined: Nov 2008

I too am a survivor of ALL. In fact, it was a pretty rare kind too. I had the ALL, and on top of that I had a chromosome abnormality. This was in the mid 80's, so cancer treatment was voodoo compared to what they do today. I went through intenseive IV chemo, total body raditation, and a bone marrow transplant that was a shot in the dark. They didn't expect me to last 100 days with the type of cancer I had. That was over 22 years ago. I've had a lot of tough things to deal with over the course of my life, but I've never had a relapse...so basically by beating the odds I've destroyed any chance of ever winning the lottery.

rossgipson's picture
rossgipson
Posts: 26
Joined: Nov 2008

forgot to list my longterm effects from chemo...

1. extremely limited range of motion
2. extensive liver damage
3. stunted growth
4. poor physical development
5. weak lungs
6. some vision problems

LaurenS
Posts: 2
Joined: Mar 2010

Hi!

I was diagnosed with ALL when I was 4 1/2 (1994), and I was treated at Dana Farber/Children's Hospital in Boston. I had 2.5 years of chemo, bone marrow biopsies, spinal taps, a liver biopsy, and tons of blood tests. I also had a central line. I'm super fortunate in that I don't have too many late effects, I have problems with my vision and brain damage from the chemo but my brain function wasn't compromised. I'm 19 now (almost 20!) and studying biology/neuroscience and a college in Maryland.

travelingteacher
Posts: 3
Joined: Jul 2011

I was diagnosed with ALL just after my sisters first birthday, I was 3 1/2 years old. Over the next couple of years I had chemo and radition treatments. I don't the details as well as my parents. I remember being in the hospital, doctor visits, lots of blood draws. I had a central line in my chest for a couple years including kindergarten. Imagine the kindergarten teacher being told if anyone cut the line she had 3seconds to pinch the tube.
After reading everyone elses post I feel extremely fortunate. One of the side effects is I am a good 4-6 inches shorter then my brother and sister. I have never been tested for any learning disabilities,but I did okay I have a masters degree in Education. Mostly at this point I worry about being diagnosed with another cancer. Oh I am 30 years old and feel lucky to be here everyday!

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