Rikimaroo wrote:Anyone do the 2day on 12 day off regimen of folfox/oxalaplatin with pump for 3 months, 6 treatments? Is the chemo tough when given like this? Also installation of the port, is that scary?
Yep! I did a total of eight treatments over the course of four months, had a setback after the fourth treatment due to an irritated colon from the chemo so I had an extra two weeks off, but otherwise was fortunate to keep to my schedule. Your blood counts will invariably tank at some point, depends on your onc how they approach that. I would do Neulasta shots after about every other treatment because of low counts. In general I did fine on FOLFOX in that I had no major side effects, not even nausea, just always felt run-down and off during a treatment week and definitely tired by the day after disconnect. I am a part-time teacher (lucky enough to only teach half day schedule at a high school, have been on this schedule for past ten years) and I worked throughout all eight treatments, the last four I took the day after disconnect off as that was my most tired day. If I were a full time teacher, I know it would have been much much harder to go back to work full time. But depending on your line of work, it is very possible to work and go through chemo—not going to say it’s easy by any means, but doable and on a good note, working is good for keeping your brain from thinking about cancer every minute of the day. If you can, ask in advance to have the tennis-ball sized pump, it was great for being able to completely conceal that you are going through treatments. I never told my students and most of the staff and they had no idea, I was able to dress to hide it. It also makes no noise so it did not interrupt my sleep. However, regardless of which pump you get, no showering while you are tethered, just giving you a heads up. The first session will be the hardest because you will have no idea what to expect or how the routine will go, etc. at the infusion rooom. It’s unnerving feeling so helpless and scared initially, but with time you will get a routine going and an understanding of how your body handles it. Make no mistake, these are harsh toxins and some bodies can not handle it so please please please make sure you alert medical personnel while there if you feel anything that could be a potential side effect.
Drink a ton of water, as much as you possibly can because it really will make you feel better and it will help to make the chemo wash out of your system and getting dehydrated is a serious issue while on chemo. When I was going through the second half of my course of treatments, I would get a round of fluids after I disconnected just to be safe I was getting enough fluid intake overalll. With the cold sensitivity of Oxaliplatin it can be hard to drink enough because you will only be able to tolerate room temperature or warm drinks and so it can be harder than you think to drink say eight cups of room temp water a day, unless you like your water that temp (I never could get used to that). So when I would go in on disconnect day I would ask for the bag of fluids, took about an hour or so, but they don’t mind, they would rather you be proactive than the suffering and pain from thinking you will be ok on your own and then landing back in the hospital with bigger issues.
As for the port, it is an outpatient procedure. For me, it was rather painful for a good four or five days afterwards. It felt like my entire left upper chest/shoulder area was used for a punching bag. I took more extra strength Tylenol for that than I did when I got home from my APR surgery. However, once that initial soreness wore off, never a problem again. I honestly would forget it was there until my hand brushed over it or I saw myself in the mirror. Many on here have said the port insert was no pain, so hopefully that will be your experience. As with all things colorectal cancer, no two people are exactly the same, right?!
I wish you smooth sailing! I can only speak for my experience, I would sum it up as miserable, but tolerable. Many times you will need to just focus on getting through hour to hour and that’s ok, keep that in mind. This will be every bit as hard mentally as physically, that’s another important component. Keep coming back here for reinforcement and letting us know how you are doing. Good luck!
