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Darci73
@darci73

Posts: 3
Joined: Mar 01, 2012

Castleman's Disease

Posted by @darci73, 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.

Liked by cdwarrior17

REPLY

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 mayoclinic.com 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.

Hello! I’m sorry that you are having to go through a rare disease diagnosis with your son. My name is Mileva Repasky and I am the Director of Patient Engagement within the Castleman Disease Collaborative Network. My daughter was also diagnosed with a different subtype of Castleman disease when she was 18 months old. The unknowns can be scary. I want to let you know that you are not alone. There is an amazing organization working to find a cure for this disease and we have a global registry of patients, loved ones and doctors. Please join the CDCN community.

It stands for Castleman Disease Collaborative Network. In addition to registering as a patient/loved one I would love to connect with you guys and offer some additional information and resources to help.

If you send me an email I can get you some information and hopefully get you guys connected to the right people who can help!

@cdwarrior17

Hello! I’m sorry that you are having to go through a rare disease diagnosis with your son. My name is Mileva Repasky and I am the Director of Patient Engagement within the Castleman Disease Collaborative Network. My daughter was also diagnosed with a different subtype of Castleman disease when she was 18 months old. The unknowns can be scary. I want to let you know that you are not alone. There is an amazing organization working to find a cure for this disease and we have a global registry of patients, loved ones and doctors. Please join the CDCN community.

It stands for Castleman Disease Collaborative Network. In addition to registering as a patient/loved one I would love to connect with you guys and offer some additional information and resources to help.

If you send me an email I can get you some information and hopefully get you guys connected to the right people who can help!

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Thank you. I joined the CDCN and welcomed all the information.
I will have my third visit with the doctor next week. I has discussed treatment with Siltiximab. I feel good and have not symptoms. Just blood tests that are classic.

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