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Are there any long term stage IV neuroblastoma survivors for children over 1 year old?


My 20-month-old daughter was diagnosed with stage IV neuroblastoma around Christmas (2006) and we were given a 40% chance of cure. She is currently undergoing treat (COG protocol ANBL00P1). I have tried searching the internet for stories of encouragement, but they seem to be non-existent. Most stories follow the same narrative: the child goes through initial therapy, achieves remission, relapses a few years later, goes through a bunch more treatments, tries the latest clinical trials and then dies. Stories of survival are pretty much all children under 1 year at diagnosis, which means a drastically better cure rate, or children who have only been in remission for a year or two and are therefore right in the middle of the relapse zone. Does anyone actually really survive stage IV neuroblastoma over 1 year old? I would like to hear about long-term survivors if they are out there.

Please ignore the link by lekarys above. Links that go to garbage websites are shameful and it is sad that someone would try to exploit the situation of a parent with a sick child.

But to answer your question- A special catogory Stage IVS (or IV-S) is found in children less than one year of age in which the cancer is localized, with spread limited to liver, skin, and/or, minimal bone marrow involvement. Survival ranges from 80-100% in these infants. The remainder of stage IV less than 1 year old has a 50-80% 5 year survival rate, while children older than 1 year old has a 10-40% survival rate.

Certain genetic markers in the tumor help predict response. Also there are some pathologic (on the slide of the sliced tumer specimen) classifications that try to predict likelihood of survival. But your daughter's oncologist and pathologist are likely well awake of these tests.

So short answer is that yes children above 1 year old to survival, but it is not as likely.

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