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stage 4

doris2657
Posts: 39
Joined: Mar 2008

Well I started my chemo Monday,it kicked my butt today has been the first day I have been out of bed my chemo is folfox anyone else have this problem...Thanks

Fiona1
Posts: 7
Joined: Dec 2007

Hi there, my husband slept for 20 hours some days while he was on folfox. He found if he forced himself to get up, then that helped a little. Best wishes.

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Hi -
It will get better and you find better ways to manage - Sleep when you need to but when you feel a little energy- take a tiny walk - keep moving as much as your body will let you - but take care of yourself - I did Folfox - 12 times - HANG in there - you need to do this -so pace yourself and know God has you in HIS hands.
Honor

sladich's picture
sladich
Posts: 430
Joined: May 2007

My first Folfox treatment was awful. I was very nauseous and couldn't get comfortable or sleep. Best of luck with your treatments.

Debbie

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

Drink lots of water!!!!

Like Honor says, get up as much as you can but then rest when you need to. Resting is healing, too.

I had taken a picture of myself, while on this stuff (along with xeloda). It was sometime last spring. I had my sweat pants, sweat shirt, scarf around my neck, gloves on and hat....oh..did I mention that was inside my house! hehehehehehe.

Keep your good attitude and energy for moving forward.

think of you
Claudia

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

It's so strange how differently the FOLFOX treats each of us! I get real neuropathic while i'm getting infused, and it's very strong for the first week. The exhaustion doesn't kick in until the second day after the infusion, and it kicks in STRONG. This may be because i get infused on Thursday's, then i have fun and enjoy life on Friday and Saturday. Saturday night, i crash BAD. Sleep forever, and very sleepy for the rest of the week! I have heard of doctors telling people you cannot get too much sleep while on this chemo. You need the rest to help your healthy cells repair the damage the chemo is doing to them.

I feel groggy and dizzy when i fight the need for sleep which is most of the time. I don't want to sleep my life away, but i don't want to make myself sicker, either.

Good luck and keep us posted!
Many hugs,
Krista

pamness
Posts: 525
Joined: Nov 2007

I know just how you feel. I hard a hard time with the oxaliplatin, not so much the 5FU. I learned during treatement that as I learned to manage the meds, I did much better during each treatment. For me the magic combination was Amend for three days along with decadron and attivan. I used zolfran and compazine in between for nausea. I crashed pretty hard on the fifth day - steriod stopped, but I had 4 OK days at the beginning and few good days at the end of the two weeks. Drink as much fluid as you can and push for the right meds for you.
Oddly enough I did better at the end of my treatment as I learned to manage the meds. I did find that I had to push to get the right meds. I keep wondering who are the people that fall under the banner of "oxaliplatin - generally well tolerated." My question is - "by who?" All the advice you have gotten is good. When you are tired rest - if you get a burst of energy or feel good- go for a stroll and do what you can. It took me a long time to accept I couldn't do much.
p.s. I didn't really push for a change in meds untill the end of round two, don't know why it wasn't offered up - I am treated at Mass General. Feel free to e-mail anytime. I don't think your experience is unusual.

Pam

apache4's picture
apache4
Posts: 272
Joined: Jul 2007

I had 16 treatments and after the first two it only kicked my butt the last day of the blessed pump! It does get better and you can really learn to plan your time as, for me anyway, each time was pretty consistent after those first two. I felt better and better each day...until the next time :)

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