Postby NWgirl » Tue Apr 15, 2014 8:58 am
Well, I met with my oncologist yesterday. Had my first round of FOLFOX a few weeks ago (had to delay it a week this time due to vacation) and was ready for round #2. I had FOLFOX back in 2008 and although it was brutal, I made it through 10 rounds. I swore I'd never do it again, but never say never. I learned if I don't eat during FOLFOX infusion (or FOLFIRI), it is much easier to tolerate. I can eat lunch when I get home - just not during infusion. It still sucks, but I can function.
So bring it on, round #2. My oncologist was very optimistic that this drug would hold things back at least for awhile and help with my back pain. I get all my pre-meds, dex, aloxi, emend, all the good stuff. Then they hook up the oxi. I make a quick trip to the bathroom, sit down and realize, my tongue itches. My tongue never itches. I turned to the chemo nurse next to me and told her my tongue itched - and that I was guessing that wasn't good. No she said, it isn't. "Now my whole mouth itches" I told her. I don't exactly remember what the chain of events were next. Thankfully my friend Maria (who ironically had just quit her job the Friday before and drove me yesterday) was there with me. I knew they'd be getting me some Benadryl - and according to Maria they shot a lot of it into my IV line very quickly. I remember my heart beating like it was about to come out of my chest. I remember getting very nauseas but not being able to throw up. I remember my head hurt. I remember my legs couldn't stop shaking and things felt very, very wrong. I remember black spots and things getting dark - I remember saying something was wrong - I didn't feel right and I thought I was going to pass out (I didn't). I remember my doctor being there watching the nurses work, checking my vitals, asking questions, giving directions - they gave me 1 mg. of Ativan and that finally helped calm me down. The blackness went away (and I did not pass out). It took a long time for me to calm down - and then I slept for 3 hours.
My oncologist said "no more oxi - it's too dangerous". This was good and bad news - I hate oxi, but it was one of my last hopes to push back the cancer. I have an appointment again with him tomorrow. He wouldn't even give me the 5FU yesterday. I don't get a bolus on infusion day - so I would have just worn the pump home, but he wouldn't even approve that. I don't remember much of what happened yesterday once this started happening. I remember my doctor saying I couldn't drive myself home and being thankful that Maria was there. I remember she got me home and got me something to eat. I remember going to bed early. Most of it was a blur. I think I remember the nurses saying this sort of episode generally happens near the end of the infusion - mine started about 10 minutes in - they said I hadn't gotten more than a tablespoon of oxi. My body made it known - very loud and clear - it wants nothing more to do with this drug.
So I see my oncologist tomorrow. Maria may or may not drive me. I think I'll tell her I can drive myself - she may not let me. She's that kind of a friend. My insurance company won't approve Zaltrap, though we did just change carriers April 1st so we may revisit that. I can do 5FU by pump; Xeloda has just been too hard on my as far as hand/foot syndrome. And we'll probably discuss Regofenarib (?) - I can't remember how to spell that. I just don't have many choices left. I've half heartedly started looking at clinical trials - perhaps I should get very serious about those now.
So that's my story. I'll write an update after Wednesday. No one, especially me, expected this. I should note I partied very hard the night before infusion. It was our celebration BBQ at my house with some of the Fight Colorectal Cancer crew. You know - perfect beautiful weather, fabulous friends, food, wine, beer - laughing so hard you think you're either going to pee your pants or bust a gut. That sort of day - but I disclosed all that to my oncologist - I'll bring it up again to make sure that didn't have anything to do with it. I doubt it's the first time I've showed up for chemo after having a few glasses of wine the night before - one last hurrah and all.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model