posted on CarePages August 22, 2011

Patrick’s eye is looking much better, but his haircut looks pretty rough. As if on cue, after I posted last about no hair loss occurring yet, Patrick’s hair began to fall out. He opted for a home grown mohawk, which is certainly savage. He is transfusion dependent for platelets, but his ANC is climbing slowly. He is scheduled for a CT tomorrow, probably platelets, maybe blood, and a MIBG injection. The MIBG scan is Wednesday morning. If these scan results suggest that MIBG treatment is a reasonable option, Patrick has “reservations” at CHOP next week for treatment. If that plan unfolds, he will certainly need another stem cell rescue. We hope the timing works out this time for him to enter the hu14.18 trial at CHOP or even CHOA after engraftment.

Meanwhile, the neuroblastoma world received good news this week from New York: the humanized 3F8 trial at Sloan is open and recruiting patients! Press On has contributed substantially to this project along with the Band of Parents and other parent driven organizations. We are thrilled that fellow NB warriors will benefit from this agent soon. You will recall that Patrick had 14 cycles of 3F8 while in remission for almost two years. Because 3F8 is derived from mouse white blood cells, patients can develop human anti-mouse antibody (HAMA), which means the patient’s own immune system kills the agent that is binding to the neuroblastoma cell. Thus, most kids don’t get enough treatment. By “humanizing” 3F8 the hope is that kids can have more cycles of immunotherapy and stay in remission forever. In addition to the HAMA issue, there are theoretical ways that hu3F8 might bind better to the neuroblastoma cells and therefore doses and side effects can be reduced!

This is a phase I trial that is only meant to establish the maximum tolerated dose of hu3F8, but we hope to see clinical improvement in kids as well! Patrick might be a candidate for this study, but there are some technical reasons why the hu14.18 trial might be a better choice for him (the hu14.18 study includes GM-CSF and adds Accutane – the hu3F8 trial does not). Either study would be a God send at this point. We hope and pray that Patrick will be once again on immunotherapy very soon! Please pray for a very minimal disease burden (i.e. clear scans!) We think this is a long shot so keep steady during those prayers.