Chloroma aka Extramedullary Leukemia aka Granulocytic Sarcoma

Wondering if anyone else has had experience with these? My mom currently has disease free marrow after a stem cell transplant for blast crisis CML in 2006, but has intractable chloromas that have taken over her right torso, and eroded through the skin. We have tried all kinds of treatment (local radiation, with and without hyperfractionation, Ara-C, G-CLAM = gscf + cladribine + ara-c + mitoxantrone), and for some reason, surgery was never presented as an option while the tumor was small and just in one rib. Now it's huge and invading ribs, lung, breast, shoulder... It's really frightening, and they are totally treatment resistant and inoperable. In my mom's case, these tumors also smell pretty bad and require a lot of care as the tumor has this open ulcer with lots of necrosis, oozing, and bleeding (with all the leaky blood vessels tumors make).

We have no idea what to expect as this progresses and it would be great to have some others to talk to about this. It is rare for chloromas to do this and is maybe more common in breast cancer? I seriously didn't know solid tumors could do this, let alone a leukemic tumor.