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Embryonal Rhabdomyosarcoma of neck

DanaSharpBarfield
Posts: 2
Joined: Sep 2008

Is there anyone who has this aggressive embryonal rhabdomyosarcoma of head and neck? Any opinion about possible radical neck surgery surgery for treatment of this?? Have had chemo, radiation and another chemo. Have referral to MD Anderson but so did IKE. Is there anyone in this world with this also. I have met no one as I have read there are only 350 cases diagnosed each year. Any info from someone who has this would be so helpful. I feel so alone. I have researched and researched online................Thanks......

dlrobins
Posts: 17
Joined: Sep 2009

Dana, I pray you are still out there either still receiving treatment,or completed and cancer free. My son Kyle was diagnosed with Rhabdo in the neck in July. He is receiveing treament, a standard protocol of VAC, however, the cancer does not appear to be responding to it as well as we had hoped. A new plan with 2 additional chemo drugs will be added to aid in shrinking the tumor in his neck. I would love to hear from you... as we are in desperate need of hearing from someone with this cancer and location.

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