miserable folfox treatment # 6

Lifeisajourney said:

Lou, I feel your pain
Folfox 7 was my last chemo session, because of issues. Monday was chemo drip and I would leave there and come back Wed about 10 am to have pump taken off. After I left on Monday, I noticed a blood return in my line so I called, long story, but they messed with pump, seemed OK, got home (still Monday)noticed if I laid down, no blood in line, so I just went to bed. When I got up Tuesday morning, pump was empty. So I did 48 hours in less then 24. Went in, could tell there was some concern, but they took pump, sent home. When I got home went to bed and don't remember much about the next 24 hours, I really should have gone to the hospital, but thought, well this what chemo is. (Hadn't found this site yet).
Long story, I was really sick, had scans and brain MRI because I was not speaking right, falling. They put me in hospital for 10 days. Onc said no more chemo, I was having a really bad reaction. It took 3 mos before I started to feel better. I am convinced that it was so bad because of the fast infusion, but no one will go there. I did recover, have been ned, but have terrible neuro issues and I am not the same person I was before chemo. So be sure your onc knows what happened, it can be dangerous. There was a lady in who increased her chemo flow and the nurses had a fit because they said it was dangerous to do that and spoke to her about it. Most people have an easier experience with chemo, but I could relate to your pain. What I have learned from this site, has enpowered me. If I have to do it again, I won't be the same nice old lady....Good luck, just wanted to let you know you weren't alone with your pain..Pat

CherylHutch said:

Unhooking pump at home
Hey Steve,

Something you said caught my eye. The head nurse said you weren't supposed to be doing flushes at home... was that because she didn't want you to be doing them yourself, or a family member/friend who wasn't "professionally" trained to flush out the port or was it for some other reason? I know I got mine done at home after every session. I was feeling fine and weather was certainly not a problem up here, but it is standard practice that a home care nurse would come and unhook the pump, do the flush and put the pump and bits into a "bio hazard" bag, which I would then take back to the chemo unit and give to the chemo nurses when I next when in to be infused. I realize that the bio hazard bag was necessary in case it ever inadvertently got thrown out into the public trash system... but what was this head nurse's fear of having the port flushed out at home?

Now that I think of it, I have a couple of options. I could have gone back to the chemo unit, but I avoid the place as often as I can ... least of which, there is no parking except in the pay parking lot where they charge outrageous fees to park there. Or, I could go to one of the public health walk in clinics... there's one a block from where I live. Or I could have a public health nurse come to my home, which is what I did. We always set a time since the pump had to be unhooked at the time it became empty... so I always had to call to tell them what time the pump was started and then they'd make sure someone was at my place 48 hours later... whether that was the morning, afternoon, evening, weekday or weekend, holiday or not. So I'm not sure why this head nurse of yours got so upset... unless it had nothing to do with the flushing, it was the fact if you are unhooking yourself and flushing the port... what's stopping you from unhooking yourself too early

Cheryl