How to slow down the growth of brain tumors in NF1?

Question

Hello doctor,

I have had NF1 (neurofibromatosis type 1) since childhood, but recently I have started experiencing headaches and some memory problems. An MRI showed a few small tumors near my brain. Can NF1 cause brain tumors, too, or is that rare? I also have painful skin lumps that are increasing with age. Is there any medication that can slow their growth or prevent new ones? I heard MEK inhibitors are used; are they safe for long-term use?

Please advise.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

Neurofibromatosis type 1 (NF1) is a genetic condition that causes tumors, usually non-cancerous, to grow along the nerves, including those in the brain and spinal cord. NF1 is considered rare, affecting approximately one in 2,500 individuals.

Treatment for NF1:

Vitamin D and calcium supplementation are often recommended to help reduce the risk of osteoporosis, which can be more common in individuals with NF1.
Bisphosphonate therapy may be beneficial in managing bone-related complications associated with NF1.
Targeted therapy like MEK (mitogen-activated protein kinase kinase) inhibitors such as Selumetinib and Mirdametinib has shown effectiveness in reducing the size and symptoms of inoperable plexiform neurofibromas in many individuals with NF1.

The United States Food and Drug Administration (FDA) has approved Koselugo (Selumetinib) for the treatment of children with inoperable plexiform neurofibromas, which are a common manifestation of NF1.

I hope this information helps answer your questions.

Thank you.