| Over the last 10 years I have tried several different treatments for my RRP along with the surgery. First I tried Interferon (Roferon A) from February 1991 to July 1992. At first the Interferon made me run very high fevers and made me pretty sick to my stomach, but after a few weeks on it the side effects weren't so bad. The worst part was that my mom had to hold me down and give me shots in my rear every other night before I went to bed. (I don't like shots.) I took the shots before I went to bed because that way most of the side effects happened during the time I was asleep and I could get up and go to school the next morning. They stopped the Interferon because it didn't seem to be helping me. | ![]() 2 weeks before surgery |
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After that I stayed about the same for about a year. I was having surgery about every 8 weeks, but then things seemed to get worse again. I started having surgery about every 6-8 weeks but each time the papilloma seemed to be worse and it started affecting my breathing more. We tried Indol 3 Carbinol then, which is kind of like juicing the cabbage but it put the medicine into a capsule. It didn't taste as bad as the cabbage juice, but it smelled real bad. This didn't seem to make much difference because I continued to get worse.
In August 1997 we decided it was time to try the Interferon again. At first I had to take shots every day for a month this time, but after the first month I got to take them every other day again. I decided this time that I was going to give them to myself instead of letting anyone else do it. I got fevers, chills, stomach aches, and muscle cramps while I was taking it, but after the first month they weren't too bad. The medicine worked in the first few months, then seemed to stop working. They increased the dose and I went into remission for eight months. (That was great!) Then in July 1998 it came back really bad. After that surgeries went from 3 months apart to 4-6 weeks apart and in February, 1999 we decided the medicine wasn't helping me anymore and that I should stop taking it.
From February to June I tried Indolplex, which is like the Indol 3 Carbinol, but it didn't help me. My surgeries continued to run every 4 to 6 weeks, but the disease spread into my trachea during that time (my windpipe). After that I needed surgery every 10 days to 2 weeks so that we could keep better control of the disease instead of it controlling us.
Because I continued to get worse we thought about going back on Interferon, but I didn't want to. I don't like the shots and I had just stopped taking it because it wasn't working. My mom took me to see Dr. Rosen in Pittsburgh on June 10th and he told us that I was good candidate to get Cidofovir which is a new experimental treatment that some doctors are using. My mom and I moved to Pittsburgh for two months so we would be close by for the treatments and in case there were any problems. They still had to do the surgery every 10 days to 2 weeks, but during the surgery they injected the medicine into the tumors or the places where they removed the tumors. Now my surgeries seem to be every 6 weeks or so again and we just have to wait and see if the medicine works. My mom and Dr. Rosen both feel that it is helping and it has made the surgery less so I guess they are right.
updated 9/14/99