Friday, April 4, 2014

IPI/PD1 Dose number Dos

We woke up quite early this morning and flew to Tampa for Bennie's second infusion of ipi and anti pd1.  We stopped by for some lunch after we got off the plane because we knew we would have a long day at the hospital.  We got to Moffitt and Bennie had some lab work, and we met with the nurse practicioner.  She said everything is looking great, and Bennie's labs looked perfect.  She sent us down to the Clinical Research Unit to start the medications, which lasts about 3 hours.  Then we will go to our hotel and chillax!!!


Bennie and I waiting out the 3 hour infusion! 



So last month went by pretty quickly, and with relatively few side effects.  He's been battling a sinus/chest cold for the last month that isn't getting better quickly so she gave him a Z-pack to kick that out.  He also has had some fatigue, which is one of the biggest side effects to be expected with both of these drugs.  Other than that it has been ok!! The side effects tend to show up with each subsequent infusion, so we are to be on the look out for anything we need to report.  Some things can be quite serious, so the earlier it is caught the easier to treat in some cases. 

Our next trip back out here for Infusion number 3 is on April 25th (granted no side effects throw him off schedule), then we come back May 16th for infusion 4, and then we come back May 29th for scans to see if this is working!! If the scans look good, and he has no new tumors, then he can continue with just the anti pd1 infusion every two weeks (instead of every 3 weeks).  So we will see what all this brings for us....but we are so blessed to have this opportunity.  We met a guy today in the waiting room that also had brain tumors resected and also had a couple lung mets pop up in November.  He travels here every two weeks and just the anti pd1 drug has shrunk his tumors by 80% (and the brain has been clear since the middle of last year)!  So great news, and positive stories are so awesome to hear! 

We love, love, love everyone here at Moffitt from the patients, nurses, doctors, and staff!   We can't wait to fly home to our sweet little ones tomorrow who are very much enjoying their time with cousin Trey, Aunt Heather, Mimi, and Pops!!