At a little after 8pm tonight, Melissa brought Max down to Children's as the pain med (Lortab) wasn't doing the trick. I cannot tell you how frustrating it is to see your child cry in pain and know that you can't rub it away, that no amount of natural endorphins will take over and make the pain go away. He will receive morphine tonight while coming up with a pain management plan that works.
Max's catecholamines continue to climb. Not a good sign. Last Monday they were VMA 37 and HVA 42. His neuroblastoma is likely progressing. However, other markers which help to measure metastatis, are either normal or falling.
Clearly, the irinotecan/temodar combination isn't working. Not entirely surprising but deflating nonetheless. Plan B (maybe should have been Plan A all along) is to try Gemzar/Velcade. The trouble with this combo is that we can't give Max radiation (to his legs for example) while he's receiving Gemzar. So it's an 'OR' solution versus an 'AND' solution. I hate 'OR' solutions in cancer. Another possibility may be to go back to his old standby cytoxan for a week or two while we radiate his femurs to take care of the pain. The problem with cytoxan is that is what gave him the bloody pee not so long ago.
Max continues to take:
Gemcitabine (perhaps starting on Thursday)
Velcade (perhaps starting on Thursday)
Nifurtimox - oxidative stress
Zometa - increase bone density
Rapamycin - mTOR inhibitor
Tetrathiomolybdate - lowers IL-6
Genestein - AKT inhibitor
Celebrex - COX-2 inbitor
Glutamine - for Celebrex (gut protection)
Skullcap - lowers IL-8
ImmuniKinoko/AHCC - elevates NK funtion
Tauroxicum - lowers IL-6 and c-reactive protein
IP6/Inositol - lowers plasma VEGF
Super biocurcumin - lowers IL-6
Zinc citrate - lowers ceruloplasmin
Calcium - For Zometa
Vitamin D3 - For Calcium