27 and Demoid Recurrance

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27 and Demoid Recurrance

by SurvivingDemoid on Thu Apr 08, 2010 04:48 PM

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This is my first post here but like most everyone else, it's not my first time dealing with my desmoid tumor. I found a lump in my left deltoid about 3 years ago. The doctor's were persistant that it was just fatty tissue. After about 6 months of having the lump, I told my family doctor I wanted it removed. He sent me to a plastic surgeon who did some tests and discovered my desmoid. Went to a specialist up in Akron who took it out in 2006. It came back and was double its original size. I had it removed a second time in 2008 and did a combination of the surgery with internal and external radiation which finished in March of 2009. So one year later, it's back again and they are sending me to get low-dose chemo (methotrexate and vinblastine) for 50-weeks. I'm hoping this will stop it from growing or shrink it. It's terribly painful and keeps spreading. Before I start chemo, I'm undergoing IVF so I can preserve my embryo. It seems that pregnancy seems to start re-growth so I'll have to think 2xs before I get them put back into me.

I know there's hope out there and many people stop them from taking over. When will they find a cure? I read on DTRF that they are looking for tissue samples to help with research. I'll be sending my tissue and hope others will do the same.

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