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Posted by Jean on August 13, 2000 at 23:03:48:

In Reply to: Re: Alveolar soft part Sarcoma - Any hope after metastes? posted by abc on August 13, 2000 at 22:28:17:

: : : : : 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 I have only recently found this site on the net and more importantly found someone (your son) who is having the same problem as myself. This cancer type is extremely rare from what I know and is difficult to come across anyone else with the same problem. I will be checking this message board frequently and hope you will write to let me know whats happening at your end.My symptoms of the cancer may be similar to your sons and it would be good to know from each other what has worked for me and what has also helped your son.
: : To ABC, would like to hear from you as we haven't been able to find much info on this cancer. My son is now in Germany getting treatment over there. We decided not to do chemo first as they say it doesn't work and thought we best leave it for last. His primary tumor was in his calf. It was very large and they amputated above the knee. Before surgery we went to Memorial Sloan Kettering for a second opinion. I have posted my email address if you would like to contact me. Hope to hear from you. Jean

: Good to hear from you Jean. I would very much like to write to you. Let me know your email address and I will write to you. I will keep checking this page. I hope your son is doing fine.I will write to you the details of my sarcoma (which is almost identical to your sons).Hope to speak to you soon. abc.



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