33 treatment

And in answer to what I think was the hidden question, yes, it feels like a hamster wheel. I feel like my life resets every 14 days. I feel immense pressure to get things done on the last couple days because I will be wiped for the first 5 or 6.

Tom M. said:

I know

I know Abita, the day after my FU5 bag removal I get super tired for 2-3 days then recharge and before you know it time to go again. I guess we should be greatful for handling it well. Some have it worse.

true. It is like when some people ask me why I never seem angry like why me. I say, little kids get cancer. so many get cancer. Why not me? I feel like it is important for me to stay positive and to realize that my situation is better than many others. 

I am not on folfox anymore, but yeah, those are my worst days also. I think it is the effect of the chemo, and maybe the steroid wears off. I just schedule in a lot of sleep time those days. Soemtimes on those two days, I wouldn't even brush my teeth or hair. Just grab coffee, feed the cats, and crawl to my desk to work until quitting time, then pop food in the microwave, feed cats again, realize my teeth are yucky and brush them, then get in bed

I really have to say how brave you both survivors are ! Im also a cancer survivor. Had chemo,  hysterectomy ,more chemo. Which was every 3 weeks aug -nov end. 2018 Break until jan16. 2019 then 3 more feb to March 29 last chemo !  Then a 2nd opinion Bc the onc wouldn't tell me how many more chemos.! Got a NED report.  I was ready to just quit chemo Bc I felt like it was never going to end !  I was determined to be done !  So I understand sorta what you both have gone through, my hat is off to you both !

PamRav said:

Hi Tom

I hear you! I was diagnosed at the end of December 2016. Since then I have had 39 chemo treatments. At various times and  various cocktails. So I've tolerated better than others, I'm just coming off of six months of four Fox which was a very tough one in my opinion.  I've had short periods of remission the first one was almost a year but they've been getting shorter and shorter. Right now we're just playing whack a mole, I have a scans every 3 months and that determines if I have chemo or not. I'm tired of doing chemo also, but I have to remind myself to be happy that it's still working.

I am sorry for your long term chemo, but I am happy that you get some reprieves. I hope those are long enough to get some stuff done, and to do some things that bring you joy that might be harder to do during chemo fatigue.

ThomasH said:

I'm up to 45 now

Like NewHere I've had 12 FOLFOX, and I'm now up to 33 FOLFIRI and counting.

 

I can so relate to the "Life resetting every 14 days" I have such a regular cycle that it has almost taken on a convenience of knowing how I will be out of commision on any given day.

chemo day 1-3 is almost nothing but sleeping

day 4-5 is a mix of sleeping and starting to do more things, but I have a lot of intestinal inflamation on these days so doing anything is pretty uncomfortable. also I'm usually tied to a bathroom for the first 6 days or so.

I always get a migraine on day 7, plus or minus a day

Day 8-10 I have bleeding sinuses and mouth sores to varying degrees, but the inflamation has generally subsideed.

My second week is the good week, and I can do most normal things again.

 

Is anyone else this regular?

Thomas

Absolutely. I know how each day will be. My most fatigued days are the 4th and 5th though.