Yes, it is rare Paul, less than 2% from what I'm reading, and like everything associated with our ole friend OC I'm learning more about it. He's been at a CCC all along, but had a post surgical reaction after discharge for an orthopedic pin to secure a fracture--before he even made it into his house he almost died. He's still recovering a week later from that at his current hospital (1.5 hrs from our CCC) as it was yet another rare reaction that no one--hosp, CDC, CCC can identify. So he has 3x setbacks at this point.

He's too weak to commute to his CCC and needs daily PT. His pre surgery biopsy escalated metastasis to skin level on the same arm he fractured, causing more pain and impeding PT progress. Imagine what that arm looks like about now :l The "good" in this is that our CCC team IS working with the CC team at this local hospital, both MOs and ROs know each other and come from the same CCC Harvard pedigree, and his palliative radiation plan is the same whether here or there.

If we were still in curative stage, I'd be carrying him on my back to CCC treatment. Quality of life trumps travel option at this point. What amazes me is the fast progression of these mets. For whatever reason they let me watch his biopsy in May so I know exactly where those needles went in, and within a month that area is now a pool of raised nodes.

FWIW, the CCC MO told us "he's not surprised" re the new nodes and I'm still trying to circle back with him at what he meant...the more I learn the more I'll share. I can confirm that before that biopsy, he had only lytic lesions, not defined tumors per his PET this May.

Last edited by Caco; 06-26-2013 04:51 PM.

Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!