Researchers still found 'excellent' survival rates for both primary, secondary disease
by Monetmom on Mon Aug 08, 2005 12:00 AM
by Foodmaven on Tue Aug 09, 2005 12:00 AM
by Monetmom on Sat Sep 10, 2005 12:00 AM
by Foodmaven on Sat Sep 10, 2005 12:00 AM
by Monetmom on Wed Sep 14, 2005 12:00 AM
by Tammy_r on Wed Jan 25, 2006 12:00 AM
by Annnnnne on Wed Jul 19, 2006 12:00 AM
by Marissa2008 on Sun Jul 23, 2006 12:00 AM
by Jessicafromnj on Mon Dec 18, 2006 12:00 AM
On 1/25/2006 Tammy r wrote:I just wanted to write to you and see how your daughter is doing. I was diagnosed in 1982 when I was twelve years old. I am 36 now with three daughters of my own. I have had 14 surgeries, the max of radiation, and one full year of chemotherapy,also hormonal drugs and inhibitors. Gleevec seemed to work for awhile. Now the tumor is growing again. Despite all this and as hard as it is to live with. Try to remember this disease is an inconvenience, but you can have a full life.
I am also 36 years old and have survived Desmoid Fibromatosis for 24 years. I was on Tamoxofin for a little over a year at age 12 and then I was given radiation of the pelvic region and lower back area. My tumor is changing suddenly after three missed pregnancies. We are now at NYU clinical cancer center getting tested for new growth or possibly radiation induced cancer from 23 years ago! I am freking out to say the least. I am also dealing with the possibilty of never having children of my own. I've been very healthy the past 23 years and now this. Anyone want to share? I'm scared out of my mind.
On 7/23/2006 Marissa2008 wrote:I am 15 and have a reoccuring desmoid tumor in my thigh. I have had four surgeries since I was first diagnosed when I was 12. My last sugery was a little over a month ago and I started radiation therapy this week. Because I have had reoccurences in the past, the doctors aren't giving me much hope that radiation will work. I was wondering what other treatments people have had that had worked. My doctors have talked about the Gleevec and chemotherapy, but they have told me that it doesn't work for everyone. Have these treatments worked for anyone?
Radiation did help stop my desmoid tumor. It just stopped and never grew again for 23 years. Now I am dealing with it again. It's like it woke up all of a sudden. I know that the doctors will find a way to control your tumor. Keep a positive spirit. Please let me know how things go.
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