I was diagnosed at age 2. I have cafe au laits, bilateral optic gliomas, a few cutaneous neurofibromas, innumerable internal neurofibromas, and a large plexiform neurofibroma that sits behind my stomach that I have named PITS (Pain In The Stomach). PITS really lives up to his name. Starting in 2018 he decided to start causing intermittent vomiting with no rhyme or reason. I was a sophomore in high school, and it was very challenging to keep up with classes and I missed a lot of school. They took pictures (CT scan) of him and discovered he was 9×12 cm. So, we headed to Mayo Clinic in Rochester, Minnesota. That’s where we met numerous doctors and had lots of tests. They decided that because of the location of PITS, that he was inoperable. I was started on Mekinist (Trametinib) June 2018, and I took it for about a year. During that time, I had to quit school. I had to focus on my health. It was a very hard time for me and my family.
I was off of oral chemo for about a year. In July 2020 I went back to the doctor because I started having vomiting again, that’s when I was started on Koselugo. I had great results with it, hardly any side effects, and it was shrinking PITS!!!!
I have been on it for a little over 2 years now and have been feeling pretty good. I worked hard and received my GED and started working at a school nearby. I love helping the kids and thoroughly enjoy working with them. I have recently completed my substitute teaching degree. I’m excited to use this to be a Para.
Then in Jan 2023 I started having severe abdominal pain, vomiting with any solid food and diarrhea. I am looking for advice, opinions, recommendations. I know that NF1 can be very complex and has a wide variety of tumor placements. It’s very hard to find someone that has tumors in the same areas as I do.
Miranda
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