Adult Neuroblastoma
 

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02-15-08 10:54 PM
Margie
Adult Neuroblastoma
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I am a 59 year old woman who was diagnosed with adult neuroblastoma in 2002.  I had two separate surgeries to remove two tumours (one in my chest cavity and one above my left adrenal gland).  In 2006 two more appeared in almost identical locations.  Within  four and a half months, I had two surgeries and 12 weeks of aggresive chemo (pediatric protocol) and lost a kidney in the process.  Since then, I undergo quarterly CT scans and so far so good.  I feel very blessed to have reached the age that I have but my heart goes out to the children who get this horrible disease.  I am very active in supporting the James Fund for Neuroblastoma Research in Toronto Canada (I live in Canada) and the Neuroblastoma Society in the UK (where I was born).  I am constantly spreading the neuroblastoma word and making people aware of the disease and the suffering of its young victims/survivors and the distress it brings to families.  My heart goes out to you all.  As there are only approximately 60 documented cases of adults with neuroblastoma worldwide, I am not able to discuss my disease with another adult.  Namaste.

02-16-08 01:31 PM
Donna Ludwinski
Re: Adult Neuroblastoma
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Hi Margie,

I am sorry for your diagnosis, but glad you are well at this point. My son is 22 and currently fighting relapse. I do know of some adults dx with neuroblastoma.

Please feel free to email me if you want to get in contact with them ludfarm@arvig.net

Best wishes to you!
02-26-08 12:57 PM
AngelSara
Re: Adult Neuroblastoma
Reply
I am glad to hear that you are doing better now my Aunt was one of the 7 people in my family that was struck with NB she was the only one in my family that was diagnosed as an adult she and her baby son were fighting it at the same time tragiclly both of them lost their battle. I admire you for trying to get the word Neuroblastoma out there I am trying to do the same thing but it is a very difficult struggle. Hang in there. Keep in touch. I am also planning on doing a myspace page for Neuroblastoma survivors to get the word out more it may be awhile because I do not have a computer at home but I am planning on it.
Sara
02-29-08 07:33 PM
Margie
Re: Adult Neuroblastoma
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AngelSara, how very tragic that so many of your family have been affected by neuroblastoma.  I hope you don't mind me asking but how old was your aunt when she was diagnosed and how long did she live after diagnosis?  How sad for her to be battling the disease with her infant son -a double tragedy in the family. Yes, so many people have never heard of the disease and so it has become a crusade of mine to spread the word to make more people aware.  I would be interested to hear when you have set up your myspace on neuroblastoma.  Take care. 
03-03-08 06:32 PM
AngelSara
Re: Adult Neuroblastoma
Reply
I do not remember off the top of my head how  old my aunt was when she was diagnosed I am missing some of her medical records, However I believe she was in her late 40's to early 50's when she was diagnosed the doctors told her that they believed she was living with NB for up to 15 years without being diagnosed she died shortly after diagnosis I believe less than 1 year. My Boyfriend is sopposed to be getting a computer that will allow me to take the time and set up the myspace page for Neuroblastoma. I have made it my mission in life to get the word out about NB as well it is so good to know that I am not alone. I work with the doctors at the childrens hospital of Philedelphia as they have a huge rsearch study going on about Neuroblastoma, but it gets hard because I live in Washington state and there is a 3 hour time difference. I am also trying to put together an Alex's lemonade stand in my area for fundraising on childhood cancers but I may not have everything together to do it this year it may be next year. Do you have any other family history of NB?