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my 6yr old son just diagnosed with Embryonal Rhabdomyosarcoma..

Posts: 1
Joined: Jun 2010

My 6 yr old son was just diagnosed with Embryonal Rhabdomyosarcoma a week ago. A large tumor was found in the testicle area. Since then, they've done many tests and scans and yesterday found cancer in one of his lungs as well. We are still to do the bone marrow as well as have a port placed for chemo. The team is discussing treatment protocol now.

This is a double whammy for me as my older son was diagnosed with Acute Lymphoblastic Leukemia 13 years ago (is a survivor thank God).

Does anyone have experience with this disease if it has spread to another location such as an organ and what the general prognosis is? We are still in the initial stages of finding everything out.

The bone marrow and the placement of the port as well as other stuff is scheduled for next week sometime.

Posts: 2
Joined: Jun 2010

there are a ton of great resourses out here. acor has a great list serve under rhabdo kids. my son hage stage 4 group 4 ERMS(emb. rhabdo) of the abdomin and bladder. with any mets elsewhere you will be stage 4 group 4 high risk.

you NEED a sarcoma team on broad. mayo, memorial sloan in nyc or MD anderson in houston are the most common places people consult. please feel free to email me at jenninman3@aol.com for more info and a phone number if you need to talk.

here is my blog and zachs caring bridge info.
hope this helps.

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