Sep 06, 2013 - 12:28 am
Err...I need educating with a big thick cancer book around the head. I'm new to this cancer business and I could really do with some info.
Here's the deal...I have advanced esthesioneuroblastoma with three mets to spine and hip. Anyhoo it's HEWUGE and they want to take it out and then do proton radiation with chemo afterwards for seven weeks - 5 times a week.
I am a single mum of three (gorgeous) kids and I don't live near my hospital (MD Anderson) so I have to rent an apartment for the duration and I need to figure out how to care for my little bears....
Can anyone tell me what to expect from the combination..I know everyone's different but like are you COMPLETELY USELESS for weeks and in agony? Or is it like you're just a pyjama clad shuffling zombie for a few days at the end ? How functional am I likely to be? How debilitating is it? and how much pain will I be in ...?
I've heard that proton therapy is less rough on the side effects, has anyone been through it? I homeschool my kids so it would really help to know roughly when I'll start needing to engage some help etc if at all....see? clueless
I've had two cycles of cisplatin/etoposide and it hit me like a steam train for a week then I bounced back..I'm assuming I'll be on a platinum based chemo regimen but I don't even know if that runs all through the radiation process, at the end..etc. I haven't seen my treatment team since chemo and I know I'll get lots of answers then but I have to plan ahead with the kids, you know how that is..
Any info would be so appreciated, thanks guys.