I would like to talk to other parents of children with Rhabdo Myo Sarcoma (Emryonal)

positivemum01 Member Posts: 2
edited March 2014 in Childhood Cancers #1

I am new here to this site. Is there anyone out there who is in a similar situation re you child has Rhabdo? My son is in week 13 of an intensive protocol. I would like to hear from anyone who knows about this topic!Our protocol runs for 54 weeks and we are doing well so far. We are in Australia.

I think I just need to reach out to someone else who is going through this specific cancer as it is so agressive. We are stage 4.

Our oncologist either does not have exact answers (ie the type we have been told is defibately NOT Alvioli but it seems not to be Embyonal either! We have no definative fish results back. It feels like we are in no mans land !

We are very positive though ! We have been told that there will be surgery then 5 weeks of radiation .

Hope to hear from you !

Lisa (positivemum)


  • Mel Mikulak
    Mel Mikulak Member Posts: 7
    another online resource
    Hi -

    I think you'll find a great resource of parents for your specific cancer at acor.org

    american cancer online resources

    You'll have to subscribe them locate the specific cancer you need answer for. My child had Neuroblastoma. 600 kids per year are diagnosed with it. We were able to find 100s of parents on this particular site to swap stories with and find out who all the great specialist are, etc. I hope it is as much help to you as it was for us.


  • LCSL2
    LCSL2 Member Posts: 3

    How is your son doing? My son has ERMS stage 4prostate/bladder