some rounds of chemo Worse than others ?

[carmelkath]

Hi All, Finished my fourth round of chemo on August 25th. I always feel ok while hooked up to my infusion pump, but on day 4,I just got so frickin' sick ! I really haven't been able to eat anything and today I had to have my beloved hubby help me get dressed after a shower. Is this what I am to expect from here on ? I am so anxious and depressed about this whole chemo issue.
I am also part of the "Clean Colon study." at Northwestern University in Chicago. I know its nationwide out of Harvard. Anyone else part of this ?
Need my buddies today. Help ! Kath

[elise]

Every round was different for me last time. This time, day 1-2 while hooked up are totally fine. Day 3-5 suck the big one with extreme nausea, fatigue and a vague "I'm going crazy" feeling. I know my onc is ok with my current schedule except he's trying different stuff for the nausea.

For me, a few days of suck is crappy but do-able. Don't assume it will get any worse. If it does, talk to your onc. I know mine is not ok with being in bed all day for days at a time. If I'm not able to be upright and move around the house, then I don't get chemo. Last time, I had 2 dose reductions and a few 1 week breaks.

Good luck!

Elise

[coloradowalt]

Your experience sounds very similar to my wife's. Days 1-3 on the pump were okay (except she hated being tethered to the pump), Day 4 extreme fatigue, Day 5 better, Day 6 better... Off week she only required a small nap in the afternoon. She never experienced nausea as she took the anti-nausea medicine as a matter of course (she didn't wait for symptoms).

[shade]

For me, the day after disconnect is a total loss. I don't have serious nausea, so I can sleep thru that bad day. Otherwise, its not too bad. Like you, I'm only 4 cycles into my FOLFOX journey, so I'm expecting worse side effects down the road. Fortunately my onc and nurse practitioner are patiently listening to my side effect reports and making changes every cycle. Hang in there...

[JDinNC]

Once taken off the pump..I was a wet noodle for about 3-5 days...basically I had one good week before starting chemo again

[ziggymonster]

For me as well while on the pump, not too bad. But disconnect day is horrible with extreme nausea even with the meds. My MM does help a bit with the nausea (better than the Zofran or Compazine)...however it really helps my appetite. The next 2 days are somewhat better but still really suck.About 4 days after disconnect I am about 85% of normal.

[JAZZToo]

I have completed 3 rounds of FOLFIRINOX with minimal side effects. Lots of energy on days 1-3, some tiredness on day 4 (probably due to coming off the steroid), lack of energy on day 5, then ok rest of time. So far no neuropathy, just a little tingle when touching something frozen. Appetite and sense of taste good. No nausea. However, I keep waiting for the other shoe to fall - though my oncologist said it shouldn't get any worse, but I know from this board, that yes it can as time goes on. My main concern is that if I am tolerating this treatment well, is it being effective in destroying the cancer cells. Since I had no symptoms, my CA19-9 is well within normal limits, I won't know if its working until my scan after round 6 which won't be until the middle of October.

Leslie
Lynch Syndrome
2014 Stage IV Pancreatic Cancer with met to the liver - FOLFIRINOX
2004 ADH - 5 years Tamoxifen
2003 Stage III Colon Cancer 2+ nodes - right hemicolectomy - 6 mos. Leucovorin with bolus 5FU
1995 Stage I Endometrial Cancer - TAH BSOLeslie

[janderson]

That has been my experience. I could have one really bad round followed by a tolerable round. It seems to happen without reason or any kind of pattern.

[SkiFletch]

For me the pattern was simple. The times I hydrated well, side effects weren't so bad. The times I slacked on it and didn't make hydration a priority I felt like a freight train ran me over on day 3-4

[BrianMc7]

For me, each round was it's own distinct event. Hydration is important. I also wonder if I should have kept a food log around for a day before through disconnect to see if there was a correlation between what I ate and I felt.

Brian

[carmelkath]

Tthank you all for the wise and encouraging tips . Just spoke to my nurse practitioner(who I love so dearly). I had been saying no to Ativan because I am in recovery. She ,my sponsor and my kids and spouse, told me that I was being way too cautious. I'm not going to feel well at all if I can't sleep, eat or relax at all. I've taken this advice and will be smarter about this.
Also the hydration piece is key, although its really hard to drink enough water without ice. When this is all over, even though it'll be winter in Chicago, I'm gonna have a frosty coke.
Thanks, Kath