Tweaking treatments

I want to post this in case anyone else starts out with a couple very rough cycles and is losing hope.

I didn't think I could do it again after cycle #1. I would rather die than do that 12 times. I'd rather have colon resection surgery every two weeks, than chemo every two weeks. (Got bad thrush throughout entire GI tract and mouth, nausea so severe I couldn't handle it, extreme neuropathy issues, and had an allergic reaction to Compezine.)

Cycle #2 went a little better. My onc took away the 5-FU bolus (push). I got Neupogen shots to bring my blood counts up. And I got the MIRACLE drug - Emend. For anyone with extreme nausea or vomiting issues I highly recommend pushing for this drug. (Got thrush again, entire GI and mouth, and the extreme neuropathy, but although bad, the nausea was much better than the first one.)

Cycle #3 - MUCH better so far. Today I get my pump disconnected. I'm feeling really pretty crappy. But compared to the first two cycles, this is doable. Yesterday on the pump I worked a full day! Today I'm more tired, but I planned to be able to mostly rest on the weekends. My onc agreed to remove the 5-FU bolus permanently. He said the studies don't show that is gives a lot of extra benefit anyway, so it is the easiest way to adjust my amounts down a bit, since I'm having trouble with blood counts. We pushed my oxaliplatin infusion time out to double - 4 hours instead of 2. This made a big difference in the neuropathy issues. I think we still need to push to 5 or 6 hours, but this is still a big improvement so far. And I'll continue to get Neupogen shots - probably every time. Also, after realizing that I get constipated the first 4 days, I took a stool softener/laxitive day 1 and 2, and I'll do one again day 3. This is making a huge difference too. I really pushed fluids harder than normal day 1 and 2, knowing how hard it gets for me. I think this is making a difference as well. Today I can't eat much, and I'm trying with the fluids, but they are going down slower. I'm trying.

So no matter how awful things are at the start, you can tweak things to make them better. I know everything is cummulative, and other issues can pop up, and you need to tweak some more. But just be aware that if you speak up about anything that you just can't tolerate, something can be done to make it tolerable for you.

I worry that some of my posts after Tx #1 and #2 might scare someone just starting chemo. So I wanted to also post how changes can help.

I am still VERY thankful to those that encouraged me to hope for the best, but plan for the worst, just in case. It made a huge difference for me to have Plan B if things didn't go as easy as I thought they would.