This mid-march trip was special in that we were flown to Houston 'free' by Angel Flight. What an experience! AF provides free air fare for medically compelling situations. With
The 3 days at MDA were mostly uneventful . MRI's (four) and bloodwork , and lots of time to kill. The Houston Rodeo and Livestock show was in town and we caught the Monday night show which was FUN and fully real-timed for the deaf. My appointment with Dr. Kurzrock didn't go exactly as hoped for though. It was decided to stop the drug (FTS) due to it not doing wh at we h ad hoped ie start regression. It's been a week and I'm still not sure if I'm disappointed or relieved! As much as I love Houston and the friendly-feel of MDA the monthly trips have become a bit draining on the wallet and time involved so a break is needed.
We will go back in May as Dr. K wants to see if I'm interested in trialing another drug. Which drug? Will let you know! According to her, new drugs that target our mutation emerge all the time. Just no one has thought to apply them to NF2 but only fast cancers. Well times they are a changin. Like I said before, this is the 1st time ever that the possibility of a drug rather than slash and/or burn has been an option. And it's not a widespread option either (2 doctor' s) which is why having Dr. Kurzrock on our side and her position as the head of clinical trials and targeted therapy at MDA is so important to all NF2 patients. Her knowledge and drive to CURE NF2 will hopefully come to be sooner than later. As for me, having to stop FTS is just a blip in the radar of the CURE NF2 mission I'm on.
Last but not least a big thank you to John Steele and MotorFund and friend Sharon Milian Mary Kay Consultant for additional help with travel expenses.