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Childhood Cancers

Posts: 1
Joined: Jul 2017

Ewings Sarcoma/effects after

I was diagnosed with Ewings Sarcoma at the age of 15.  Went through a year of chemotherpay and a month of radiation.  They told me that they didn't think I would be able to have children but I have two beautiful girls.

At the age of 35 I was diagnosed with Cardiomyopathy and Diastolic Dysfunction and was on medication for several years. 

In 2013 I was diagnosed with a widowmaker blockage of 96% blocked and had no symptoms at all. The cardiologist told me I was a heart attack waiting to happen.

Posts: 2
Joined: Mar 2017

myxopapillary ependymoma

Hi I am new to this site. My 10 year old son maxopapillary ependymoma has returned after he had a gross resection surgury in his L5 to s1 spinal cord when he was 7.

The doctor  said it has hemoraged thats probably when the pain started they operated and were hopeful they got it all. Now it has returned in the same spot in three small tumors. We recently had an MRI of brain and that was clear except for his archniod cyst that has not bothered him. They wanted to make sure there was no other surprises.

Posts: 41
Joined: Sep 2016

Private Message Spam

Hello everyone,

Thank you to all of you who have alerted us to the PM spamming from earlier today. I apologize for the inconvenience. While we do have securities in place, we are not always able to catch all spam, and we are trying to figure out how this one got around our system. If you received a message from jegac1 please do respond to it or share any of your information.

Jegac1 has now been blocked from the CSN site.

Again, I am sorry for the inconvenience. Please continue to report any email spammers or questionable behavior you see.

Best regards,

Posts: 15
Joined: Feb 2015

T-Cell Lymphoblastic Lymphoma Treatment

Hi all,

Posts: 3
Joined: Nov 2016

Childhood Leukemia survivor Anyone ever have anxiety or depression as an adult

Hi my name is Ryan   I had ALL at 4 years old.   22 year cancer survIvor.   I am 29 now       Has anyone dealt with anxiety or depression as an adult?   Focusing issues?    thank you 




Posts: 8
Joined: Feb 2006

Anyone look into stem cell treatments for muscle/bone atrophy/wasting from radiation treatments?

I am wondering if anyone as looked into this?  I had hodgekins at age 6 and the radiation treatments caused a lot of atrophy and muscle wasting.


Posts: 2
Joined: Aug 2016

Bladder Rhabdomyosarcoma and local contril

my my two year old son has bladder rhabdomyosarcoma that is now in the urethra. The original vac/ vi regimen didn't respond and we are doing radical bladder removal in a week. Has anyone done is or have any advice? Excuse this font! 

email Jeannie

Posts: 3
Joined: Nov 2014

Not the type of survivor we're looking for?!

I recently had a startling email from a non profit event director. See I'm a painter andwas browsing Craigslist for art gigs to get my paintings out there. I stumble across what I thought was a perfect gig. They were looking for artists to do demonstrations and donate pieces for a local event to help raise money for childhood cancer research. As a survivor of ALL at one year I thought it was a perfect fit. So I emailed the guy/gal that I was a local artist and cancer survivor happy to help.  

Posts: 2
Joined: Apr 2010

2 Broken bones and cysts

My 14 year old son is a Wilms Tumor survivor.  Despite an obstruction a few year ago, he is relatively healthy.  During a baseball game he broke his left hand.  3 weeks later he broke his right wrist during another game. 2 broken bones in 3 weeks.  During the xray and CT scan, they also indicated that he had cysts.  I know sometimes ganglion cyst (which in themselves are not a big deal), are misdiagnosed. They just kind of said it in passing, but this is an orthoped that has not reviewed his history.

Posts: 4
Joined: Apr 2016

Coming to terms with it at 24, help please

Hey all,

I have always religiously avoided these things, but I think that's part of the problem and why I'm here. I need to know if anything of this stuff sounds familiar because I realize it's starting to hamstring my life a bit.

Background: Army officer, 24, from New York. Had ALL as a kid around 3, went into remission quickly but was in and out of the hospital a lot for a long time with the remedial chemo etc., think it finally ended around age 8.

I need to know if any of the following sounds familiar, is it a problem, and how did you deal with it?


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