I am going to try and record what goes on during my FOLFOX treatments. Perhaps it will help someone down the road. Today was the first day and it was not nearly as scary//nerve racking as I thought.
My treatment is given at the Texas Oncology in Austin. The infusion bay/room is very bright and soothing. There are easy chairs for the patients (kind of tactical lazy-boys) and small loveseat/sofas for the visitors. Since this was the first time for me I was given a training session by the infusion nurse. What she told us was pretty much a rehash of what the other documents we were given and what I read here. In addition I received a cool knapsack with all sorts of goodies. It had fleece blanket, beanie hat, scarf, and other stuff. Some of it was a bit too cancer reminder stuff and I don't need reminding about that. There are snacks scattered around the room like pretzels, trail mix, bottles of water and little bottles of Ensure.
The day before I was given prescriptions for EMLA cream (a lidocaine/prilocaine cream to deaden the area around the port before the stick), Zofran (ondansetron - for nausea. It is specific for chemo induced nausea and is not supposed to be sedating), Phenergan (promethazine - another nausea drug. Quite sedating and shorter half life than zofran), and Ativan (lorazepam - for anxiety and to help with sleep).
I had also found online some t-shirts that allowed for easy access to the port (http://www.comfychemo.com/
). Being a guy I don't have an low cut v-neck shirts and being a computer nerd I don't even have any button down shirts. In addition I had talked to some people who said you should wear the same thing every time and then burn it all when you are done! I bought two and they are very soft and comfortable.
So I had been told that it would be about 2 hours - but that is only for the main infusion course. It really is going to run about 3.5 - 4 hours with the checking in, lab work and premedication. The premedication had a small bag of IV zofran run over 30 minutes, then a small bag of dexamethasone with a piggy back of leucovorin (Folinic acid - the FOL in FOLFOX), this was also run over 30 minutes. After that was done she started the two hour infusion of Eloxatin (oxaliplatin - the OX). It wasn't too unpleasant. I read a bit, watched a John Wayne movie for a while, napped and had a few snacks. I am a IV taster - in other words when there is a push often I can taste what drug is being pushed. For example there is a distinct taste to the normal saline that is used to clear lines, to me it tastes like what hospitals smell like, kind of a antiseptic smell. However other than the normal saline I never did get a strong taste of anything bad.
After this infusion was complete the nurse pushed 5-FU (fluorouracil - the second F) and then hooked up the infusion pump and showed me the button to push if it started beeping. We tinkered with a few ways to carry it in the little pouch, set up the appointment 46 hours later to get it disconnected and I was free to go.
By the time we got home is was feeling a bit off - not really bad per-se but not 100%. I had a bit of queasyness - food just didn't appeal to me at all. I took a phenergan since they told me you could have both zofran and phenergan together. It made me really sleepy so I took a good nap and then got up to do some work. I had a little snack and noticed the first bite pain. To me it felt exactly like when you bite a lemon and feel you salivary glands spasm - not too bad but there. I didn't push my luck on cold stuff so I can't comment on that and no pins and needles in my feet and hands.
At bed time I took another phenergan as I was still feeling suboptimal tummy wise and figured out how to sleep with the pump on my bedside table. The little noise it makes when it pumps is only slightly chinese water torture like. I remembered to pick it up when I had to go to the bathroom at night so I never jerked it off the table. At about 2 am after peeing I took another phenergan as tummy was unhappy (not really nauseated, just unhappy).
All in all slept not too bad and got up to have breakfast with my wife. The coffee was good - but nothing was really appealing food wise. I took a zofran and had some toast.
I figured out the shower dance with the pump to keep it dry and used some saran wrap to put over the port to keep it dry.
As part of our kit to take home I got a toxic waste spill pack. It has goggles, gown. biohazard bags and instructions to bring everything back to the clinic if deployed. I told the guys at the office if I spit on them it would be instantly fatal. I am not sure if the believed me.
So first treatment - not too bad as yet. I would describe feeling a general malaise, or perhaps ennui or even le cafard. I do expect it to get worse as the treatments wear one but am going to take it one step a time and my next step is tomorrow to get the pump removed.
11 more treatments to go
If this is TMI or not the right place let me know.