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Neuroblastoma research

Posted Jan 15 2009 7:54pm 2 Comments

I’ve had quite a few people looking here for the most recent neuroblastoma research. Here’s an excerpt from Yahoo news and the link to the article.

Researchers have found a gene that causes most inherited forms of neuroblastoma, a rare and deadly form of childhood cancer, and say the discovery points to new treatments.

http://news.yahoo.com/s/nm/cancer_neuroblastoma_dc

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The article above signifies an advancement in the inherited form only. 

 My son has Recurrent Neuroblastoma....we have already traveled the road of the initial diagnosis and the followed the recommended protocols, that ultimately blessed us with a 3 year cancer free timeframe. 

 With this cancer, it has a 50% chance of recurring...and it's deadly wrath unveals itself.  It is more persistant and more aggressive than the first time around...almost like a the cancer has a brain...and comes back tactfully and revengefully...leaving a less than 5% chance of survival for these young kids.

 Due to it's lack of popularity, there is very little funding that goes into the research of this cancer...however, that is not to say there is no hope.  I know first hand that Memorial Sloan Kettering in Manhattan, NY is a world reknown leader in Neuroblastoma research.  Many of thier patients come from all around the world.  This facility gives you hope!!!

My advice, if it's your fist time around...go with the standard protocol for treatment...as it's been years (decades) of research to get to the cancer free level.  Then follow up the standard therapy with an after therapy such as antibody therapy. 

 If you happen not to be one of the lucky 50% and it reoccurs...I'd suggest phase 1 and phase II studies.  Lots can be said lately about retinoid therapies as well as antibody therapies.  It may not be the cure we are hoping for, but alot of these newer therapies are allowing for stabilization...buying more time, perhaps? 

All I can say is, if you know a young child with Neuroblastoma, whether it's your own child, a neighbor or a friend...it is very important to be optomystic.  You'll quickly learn the true meaning of love.  Love is:  when the mere thought of losing that person forever, brings a sudden urge of pain, to the point your chest tightens up, your eyes water and you just can't bear the thought any longer....that is love.  So it is important to be happy, make memories and you'll have no regrets.  Life is sweet...you just need to look beyond the packaging.

Thank you so much for sharing this information. You are right, this news is an improvement for the inherited version of this disease. All of the best for you and your family and I hope every day that goes forward brings new options and choices.
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