Originally Posted by harleyhalfmoon
At first, the chemo was working really good, really fast, on my neice, but now it's not working very well and now it's spread to her central nervous system. What exactly does this mean?! I know it's not a good thing and they are regularly flushing her spinal cord with chemo and doing a spinal tap weekly to make sure the cancer doesn't spread to her brain, so I know it's very, very serious, but what exactly does it mean, that the cancer has spread to her central nervous system? Does anyone know? Does it mean that the chemo is not working at all? Or that her chances of survival are drastically lower now? (Please don't candy coat it too much, even if it's a bad, bad thing and means she could be handicapped... or worse. As bad as it sounds, I need to know exactly what we're dealing with here.)
Hi there.. My daughter was diagnosed with ALL in Feb of this year, so I am familiar with a lot of what your niece is going through.
What it means is that the leukemia cells are present in the spinal fluid.
As far as your other questions, I'm unclear as to when they found the cells in the spinal fluid -- was it during the tests they did at diagnosis? Was her spinal fluid clear at diagnosis, and now it's showing leukemic cells? According to the time line in which you've posted here, she should still be in the induction phase. Induction is sort of like a full-on assault of the immune system (via the chemo), attempting to obliterate the cancer cells, and I wouldn't expect the spinal fluid to be involved at this point.
As far as -what this means-, there are all sorts of factors the doctors use to give a prognosis. CNS involvement (the cells showing up in the spinal fluid) is definitely one of the things they'd use to indicate a poorer prognosis, but it by no means is a finality.
Your brother needs to ask the doctors at all stages and when anything changes, "How does this affect the prognosis?" I say this because your niece, again, will have a list of different factors that are unique to HER that change the prognosis overall.
I'm sorry this is affecting your family. I hope for good news.