Posted by abc
on July 04, 2000 at 06:18:45:
In Reply to: Re: Alveolar soft part Sarcoma - Any hope after metastes? posted by rosilita on June 08, 2000 at 11:39:05:
: : My son, 22, has Alveolar soft part sarcoma with metastes to the lungs. We've been told there is no chemo that works. Does anyone know anything about this type of rare cancer? Any options? Do you know of anyone who had laser treatment on the lung metastes? Or does that? We are willing to do detox & nutrition therapy but want more info on this type of cancer. And how long can you live with it?
: i don't know anything about this type of tumor, but i looked it up in the medical dictonary and this is how they defined it" a variety of sarcoma having a fibrous stroma enclosing gtoups of sarcoma cells enclosed in alveloi walled with connective tissue. a rare tumor occurs betoween 15 and 35 years of age. occurs in the muscle extremeties or head and neck of children.now the good thing is it says "slow growing and commonly metastizes to the lung, brain or bones." it also says it is a complete seperate entity than any other type of sarcoma. that means what you read about the other sarcomas probably don't apply to this. there are a lot of level 2 clinical trials going on with different sarcoma types. one in mayo and one in sloan kettering. you can call them and see if this particular diagnosis would exclude him from those trials. good luck to you and your family, look for a clinical trial if they are telling you there is nothing they can do. at least this appears to be slow growing, ulkike something like lung cancer.
Jean, sorry to hear about your son. I'm a 28 year old fellow who has the same sarcoma as your son also with mets to the lungs and suffering the same uncertainities about the whole thing. I've also had chemo and all which has'nt proven any good.What Rosilita has replied is the best and the only information I know as well.Let me know if your son has progressed in trying anything else and I will let you know the same.Hang in there.