Rhabdomyosarcoma

My grandson has just started treatment for his second rhabdo. He had a tumor in his abdomen attached to his bladder. The drs say this is a rare place to have it and cannot find a case of re occurance after treatment We are in a drug study for treatment this time. Has anyone had this type of cancer?? Any assistance would be appreciated

Dear Grandma, My daugther has been diagnosed with recurrent rhado this past March. It reappeared in her lungs after initially being in her upper neck area. The battle is yet on-going. Please give us a call if you can. we'd rather talk to you if possible about what we have experienced treatment-wise. We will be praying for your grandson. Jesus still heals today! Marque and Lisa

Hi, I came across your post regarding your daughter.  How is she doing?  What kind of treatment did she have?  We are currently going through chemotherapy treatments for my 7 year old son.

 Thanks,
Michelle

My 18yo son has been fighting Rhabdo since he was 16...unfortunatley he replased 4 months ago with it spreading to the lining of his brain.

His initial chemo treatment didnt work and after relapse he was treated with radiation and Irinotecan - this has had some effect.  Plus he is now on a clinical trial - IGF receptor drug by Pzifer, which is non-toxic.  He had to stop Irinotecan because he ended up in intensive care with grade 4 poisoning.

We are also using alternative therapies, mainly the Bill Henderson protocol.  So far he is stable and cancer has shrunk slightly - however Rhabdo (especially Alveolar sub-type) is very aggressive and recurrent.

 Hope this helps in some way

Archie

hi

my mum 49  had rhabdomysarcoma, verry rare in adults, it was agresive but after surgery it was removed from her thigh and so far made a good recovery from it now 2 1/2 years ago.

although she now has a small version in her lung due to be operated on, i think the prognosis seems good. we live in the uk and its the waiting thats hard to deal with. i just wanted to wish you the best of luck.

it seems common for re-ocurance so it seems regular scans is the only way to stay on top of it. im finding it hard to get answers on my question.

 

good luck