Postby Burntoutzen » Wed Apr 15, 2020 1:15 pm
Hello,
I'm newly diagnosed and recently found this board (well, to be honest, my wife found it and said that I might find it interesting\helpful while going through this journey).
I was diagnosed Jan 21, 2020, after 2 colonoscopies (the first one failed, the colon cleanse didn't work)
First surgery Feb 11 only to find that because of size and location of tumor (Grand Central of veins, leaning on bladder, about the size of a large orange), could not be removed
Finally started chemo (after pushing back on surgeon who wanted to do ANOTHER surgery before starting chemo to give me a colostomy bag without looking at other opetions, but that’s a WHOLE different story), on March 3
Treatment plan is to do 6 rounds of chemo (FOLFOX) then take 4 weeks off, do a CT scan to see if tumor has shrunk enough to be removed (Keeping our fingers crossed!), have it removed, and then do another 6 rounds of chemo to finish anything remaining.
My experience with FOLFOX has been a little different from what everyone (including that Dr. Google that we all know).
Round 1 – everyone said that the first round would make me nauseous, I’d get cold sensitivity in my hands and wouldn’t be able to drink anything colder than room temperature. To be honest, I kept looking out for these side effects and never experience any of them. The only thing that I noticed was that I was REALLY tired, like getting out of bed took most of my energy.
Round 2 – This is where I started to notice a little of the cold sensitivity, but it wasn’t too bad. It was just when I picked up cold things, it would take about 10-15 seconds, then I would get a tingling sensation in my fingers but nothing too bad, and it went away pretty quick after I set the cold thing down. My energy started coming back too, I mean I wasn’t going to run a marathon or anything, but I felt well enough to do a little work around the house (moved a closet rod in my wife’s closet, replace a fluorescent light in the kitchen), so that helped boost my confidence and mood.
Round 3 – This one was a little tougher, I went in on my chemo day, they ran my labs, and I was told that my white blood cell count was low and that I was running a low fever. They called in a prescription for some antibiotics and sent me home. I got home, took a nap, woke up, ate a little food, and took another nap. When I woke up the next time, I was feeling warm, so I took my temperature and it was around 102.5. I took some Tylenol, waited about 30 minutes, took my temp again and it had not gone down at all. We called my oncologist who said that I needed to go to the ER. Of course, this scared both my wife and I to no end, so we packed a bag and ran down to the ER. I was there for 4 days, got a LOT of fluids, antibiotics, and the shot (I forget the name of it) to help my body increase my WBC. In a matter of days, my WBC count went from 300 to 15000. I got out of the hospital on Thursday, had a good weekend, and went in that next Monday to get round 3. After getting round 3 done, I have had a pretty good amount of energy, only felt nauseous one time (but I think that’s because I forgot about everything and ate too much to fast on Easter, but who doesn’t do that??).
I go back in 5 days to get round 4 behind me, and hopefully my body keeps responding the way it has after the first 3! I'll try to keep posting after each treatment, so maybe my experience will help others deal with their diagnosis and treatment. I know that when I got mine, it was a LOT of information that was thrown at us all at once, and it has taken a LONG time to get our heads and arms around it all.
- burntoutzen