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| jared's mom |
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Posted:03/09/2005 5:20 PM |
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hi: I know some gave her e-mail address in the past. I have had contact with Dr. Biegel but we changed our internet carrier and I cannot find it. We finally located a tissue sample from Jared's tumor and want to send to her for the genetic testing. the only problem is that there is only a scant amount left. so if we send it for testing, this may be the end the tissue. Can someone who has particpated in this testing tell me what exactly they can find out about Jared's cancer. She was able to confirm diagnosis ATRT from the slideswe had forwarded to her but the acutal tissue was not located at that time. I fear that in a few year there may be another test that can tell more about the cancer, but we may not have any tissue remaining at that point. Any information about Dr. Biegel research would greatly help us in out decision.\
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| Liz Gugel |
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Posted:03/09/2005 10:24 PM |
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We were also in touch with her back in 1998. We sent samples of our daughter's tumor to Dr. Biegel as well. We were hopeful of the efforts her team was doing. At the time, they were trying to locate a genetic association with this tumor. She did tell us at the time that it could be 10 years down the road before anything meaningful happens. We also sent some samples to a doctor in Germany. His name is Dr. Rupert Handgretinger. At the time, he was the only one I've talked to that has seen/handled mutiple (I think it was 6 or 8) cases of Rhabdoid tumor over the years. Most doctors did not know what this tumor was, and a handful only see it once in their career.
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