Topic: Votrient (pazopanib) working wiht FGFR2 mutation
Wow - Brutal experience.
My father, 75 years old, has intra-hepatic cholongiocarcinoma with BAP1-E9 and FGFR2-CD2AP genomic alterations. We've had limited success with y-90 and Gem/Cis. The Y-90 appeared to stop the growth for a couple months, but we started seeing new growth around the edges of the cancer. We then followed one treatment for each side of the liver, by Gem/Cis. This also showed limited success, and appear to stop the cancer during the treatments, but the cancer would start growing between treatments.
The most frustration part of this experience has been the deterioration to his gait and cognitive abilities. While before this started he could walk 2+ miles every day, Lately, he's been limited to a walker and wheelchair. He can walk around 150 feet with the walker, at best, and needs a wheelchair most of the time. His cognitive ability has seriously deteriorated and even doing a simple puzzle is beyond his ability. This started around June 2015.
Good news. We started Pazopanib on 2/12, since Foundation One indicated, this drug may be successful on his cancer due to the FGFR2 genome alteration. Great news. My dad's cancer is stable, with the last MRI (May 9), at 15.6cm x 8.2 cm right liver, 8.4cm x 4.6cm cm left. More importantly his gait and cognitive abilities are improving. He can walk a flight of stairs (first time in a year), use the walker for around 1/2 mile, and has stated working on puzzles. You can see his mind working.
So while all the neurologist have disagreed, I have firmly believed my dad's walking and cognitive issues were secondary to the cancer. The doctors explained this was NOT a known symptom of cholongiocarcinoma, and it was due to my dad's age. Clearly, as his cancer is improving with Pazopanib, we are seeing significant improvement in his mental and walking abilities.
So now I need to work on the next step. It's clear from all the reading that the cancer will continue to mutate and then become resistant to the Pazopanib. In most cases this happens quickly especially, since my dad is taking 1/2 the required dosages of Pazopanib to mitigate any complications. I've been trying to get an appointment with MD Anderson, but they say they won't see him until "restaging". However, I just saw my dad's oncologist on May 12, and he agreed it was a great time to discuss future treatment options with another facility. My next appointment with my oconologist is August 12, and my doctor agrees that my dad may longer be improving at this time. However, since my oconologist appointment passed by two days, MD Anderson says I will need to call them three weeks PRIOR to his next appointment (August 12). So by the time MD Anderson will consider my dad, he may NOT be healthy enough. Furthermore, while he's feeling better, it's important to further characterize the cancer.
I'm NOT sure what to do. I'm currently going to University of Miami. I need to see a facility that specializes in the FGFR2 genome mutation. It appears Mayo is strong on liver transplants. Any recommendations for the best facility? How's Moffitt in Tampa?
Anyone have a similar experience to me with the cognitive and gait issues with this cancer?