First chemo tx

[lunaone]

Just had first round of Folfox yesterday, now on 46 hour 5-Fu pump.
Everything went great, got a little nauseous at the end of infusion and I felt very tired and icky the rest of the day.
I woke up day 2 feeling pretty darn normal!! The coldness neuropathy is weird!!(When i touch or drink cold things it feels like touching cold metal and the feeling stays for a few seconds after). I don't like having this pump, it's very annoying. At least it's only for 46 hours every 2 weeks.
I had read some posts about what to bring to infusion center and they were very helpful. My center has warmed blankets and a TV.
I am glad I brought my Mom for company, my kindle, snacks, notebook for notes and extra blanket. I am always cold in controlled indoor climates, so even the thin warmed blankets got cold. Plus, what is there to watch on TV in the day anyway??

Megan
stage IIIa colon cancer
colon resection 8/9/12

[Jen-32]

Hi Megan
Glad it went well, and not long now till you get rid of the pump. I wear my pump in a small cross body bag rather than the bag they gave me (except in bed) an I find that it "dangles" around less then. Plus my bag looks much nicer! I find the pump gets less annoying as it gets lighter over the couple of days I have it.

Hope you continue to feel ok during this and future rounds. Taking mums, friends whoever always helps pass the time. I've found downloading a new album off iTunes before I go and then listening to it from start to finish during my infusion a nice little treat on treatment day .
X

[elise]

Super news

[Lara239]

I am glad it went so well! My husband has to start his first round of chemo in a couple of weeks. I am curious about a couple of things in the "chemo" room.
1. Do they usually have wireless..so you can bring an ipad/laptop or somethng like that?
2. how long does it take to get an infusion?
3. are you allowed to talk on your cell phone? (my husband wanted to know this since he always has work related calls and stuff)

[RixInPhx]

Good job!

How many to go, 11 more?

On day 2, I'm usually a little buzzed with the decadron steroid, so that might be why you were feeling srprisingly normal.

[Jen-32]

Hi Lara I'd guess the answers to your questions vary according to the hospital your at and the regime you are on. Have they offered your husband the chance to go to the unit to meet the staff and find our about the routines before he actually starts treatment? I did this and found it really useful.

[Lara239]

Hi Lara I'd guess the answers to your questions vary according to the hospital your at and the regime you are on. Have they offered your husband the chance to go to the unit to meet the staff and find our about the routines before he actually starts treatment? I did this and found it really useful.

not yet, we are going to see it next week though. We chose vanderbilt in Nashville.

[Angiemarie2000]

Megan,

So glad it went well. I'm on # 4 and I'm still feeling pretty normal. I hope the same for you.

Lara,

I take my conference calls from my infusion room, it's private and they have wifi too. My infusions last about 5 to 6 hours, but thatttt includes blood testing time too.

Wishing you both BOL

Angie

[lcook6]

awesome news

[handicap18]

Glad to read that things went well. I'm 10 ahead of you. My first one the chemo days went well. The 3 days after disconnect I got very tired. Once day 7 hit I was prett ymuch back to normal.

Keep in mind that the side effects get worse and the cumulative effect of the chemo does catch up to you. I did pretty well up to #6. After that I started having a lot more diarrhea issues. By #10 things quieted down and so far this time around I feel much better.

I started juicing shortly after #1 and that has made a world of difference for my overall health and being able to tolerate the chemo better.

I agree the pump is a big ol pain in the Gluteus Maximus. I can't wait to disconnect around 10:30 tomorrow morning. Durning the day I run the line from my port to the pump down the inside of my shirt and just don't tuck my shirt in. At night I run it out the collar of my shirt and keep the pump on the bed. This gives me more room to move around sleep better.

Good luck with the rest of your treatments!!

[lunaone]

Thanks Jen-32 and Elise! Lara, I think it varies depending on where you're being treated. I am able to use my phone, but not sure about internet. I'm on folfox and once everything is in place and ready, it's a 2 hour infusion, but I was there for almost four hours today.(2nd round) They clean and retape my picc line, and give me anti-nausea tablets and wait for those to kick in. Also some of the waiting is for the pharmacy to prepare my chemo. Good luck!

Handicap 18, thanks for the good info. I might look into getting a juicer. Yeah it seemed like right after disconnect I started feeling worse, tired and nauseous. I had worst migraine in my life day after (and I've had them for over 20 years). Next day I ate wrong food and had some diarrhea. I got more dehydrated than I thought because I was having severe stomach cramps off and on a few days after, so I stepped up my water intake and that got better. Nausea, headaches and diarrhea went away around day 8 or 9. Fatigue continued, my husband has been making me go for walks after a nap and getting more protein. I haven't quite felt normal but I'm learning how to deal.

The most important thing for me to have a 'good' day is my new morning routine. I start with 2 glasses of water (only as fast as nausea allows). Then pepcid and small snack, then I get to have my coffee! After that I snack again and as frequent as possible. Meals are a thing of the past, though I do have a small dinner with my family.
Sorry about the long post, I just want to get helpful info out there as others have done for me.

Question: Has anyone experienced significant hair loss with folfox? My onc said yes, rn says she hasn't seen anyone with more than just thinning.

Good luck and thank you to everyone

Megan
dx 7/12
colon resect 8/9/12, 2\39 nodes
Stage IIIA
Folfox started 9/5/12 for 6 months

[takemeom]

i just had my 2nd folfox tx,
the first one i had constipation and diarrhea and felt horrible
this time, i am only fatigued,
i hope it stays like this....
is every tx reaction different?

[pog451]

Greetings to all you fellow Folfox travellers.

Ive just completed my fourth infusion, but as Im on a slightly different protocol to you guys (weekly infusions for 4 weeks, one week off) I guess its about equivalent to two of your rounds. Ive just had enough to be able to determine what is a side effect and what not. After coming off the 5FU infusion (as im on weekly mine is 24hrs) Im usually a little tired and (very) hungry but otherwise ok. On day +1 I can be tired and a little queasy, on night+1 I tend to get a steroid buzz/crash and on day+2 I tend to feel a little like Im going down with a cold and my GI system gets very excited - Neither constipation nor diarrhea but frequent (and often, interestingly, voluminous) BMs. Day +3, if I get a good nights sleep, Im pretty much 100%.

No signs of cold sensitivity, pins and needles or other neuropathy (yet), although my fingers and feet do feel warm now and again and I get occasional minor "zaps" of pain like a pin prick (similar to when I was on Xeloda) in my fingers.

So far, so good (if the stuff is working). I now have a week off, then they are giving me a port and adding avastin to the mix. Ill be extatic if it stays like this, but it can get a whole lot worse before it starts bothering me. We will see.

Im going to do two rounds (ie 2x 4 on 1 off, about four of your 2 week rounds), then we'll re-scan and (hopefully) make a surgery plan. Otherwise, its Folfox for as long as it takes.

Good luck to all of you on the same path.