Welcome to my fund raising page for the Desmoid Tumor Research Foundation (DTRF).
To be honest, I don't know where to start. I can't even begin to tell you how important the DTRF has been to my journey and me. I was diagnosed with a desmoid tumor 6 years ago. I was worried when I found out they had a 50% chance of recurrence but I had surgery in October to remove the tumor. I didn't tell anyone what was going on and brushed it away. It was benign so no need to tell anyone.
Then it came back 9 months later. I had horrible shooting pain through my arm that made it difficult to sit still. The doctor originally said it was just scar tissue build up. I knew. After 11 months, they confirmed it was back and was larger than a golf ball. I had surgery in December and then 3 months of radiation. I was a mess. I was having radiation months before I was set to marry the love of my life.
We wed in May of 2010 and it seemed like things were getting better. I had my 6 month MRI and it came back clean. Then I noticed my shoulder was getting hard and I had slight pains in my arm again. I convinced the doctor to let me have my MRI early. They discovered it had grown rapidly into my shoulder and back. It was described to me as a snake. It was enormous. If I chose surgery it would take 10 hours and I might lose my arm. I was devastated. I made a difficult choice and had a full 12 months of methotrexate/vinblastine. I threw-up every week. My stomach was in constant pain. My hair thinned. I thought we killed "Fred" the desmoid tumor in my arm.
I had a 6 month MRI and they told me that the whole year of chemo didn't work. It was growing AGAIN. They told me that if the tumor progresses it could invade my chest cavity. If it invades my chest cavity, it would become life threatening. So in January, I started on a new chemo I was introduced to at the DTRF symposium - sorafenib. I've been on it for 8 months and the doctors are hopeful. They think the tumor is shrinking.
The DTRF provides me with a support community of people who understand me. They publish articles that are relevant to me. They fund research (like sorefanib!) and are trying to determine what causes this disease. Without the DTRF I don't know where we would be. I'm grateful for the foundation.
Please show your support. There are so many people like me who need the DTRF. Your donation will go a long way. Don't forget to forward this to anyone who you think might want to donate too!