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Castleman's Disease

Posted by @darci73 in Just Want to Talk, Mar 1, 2012

My 16 yr old son was diagnosed with Multicentric Castleman's Disease. He was found to be HIV negative and also HHV8 negative. Does anyone know the prognosis or have any experience with this disease. I'm told it's very rare. He is undergoing chemo therapy soon. I've looked online and what I've read isn;t very comforting. The doctors don't have a lot of info. either concerning this. Was just wondering if there are any personal experiences. Thank you.

Tags: castleman


Posted by @ginachick2383, Oct 2, 2012

I have this disease they would treatment with chemotherapy I live in Minnesota St. Luke Hospital in Duluth their have good doctor you can find me information on it will help with you need more from me look for me on Facebook by Gina Reinhold I have for 6 year now it a long time for it.

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