First FOLFOX-6 and he's so sick

[JMRWife]

Hi all,

My husband had his first infusion today. He got the oxyplatin (sp?) at the hospital, and went home with a pump of 5-FU. The nurse said he'd feel GREAT today and tomorrow, because of the steroid he received. But that turned out not to be so. He feels awful--nausea, muscle aches, bad headache. He says it feels like the flu.

The anti-nausea med isn't helping--at least he's not vomiting. I'm just wondering if this is normal? He is worried he won't he able to work during chemo if he feels this bad now...and if he doesn't work he loses his insurance. We are scared.

[justin case]

I didn't like the first day much, for me diarrhea! The second day was OK. There is a chance, it is the chemo, and there is a chance, it IS the FLU

[JMRWife]

LOL--OK, I guess we'll just have to sit tight. We're not yet veterans. Thanks for reaching out.

[jhocno197]

It affects people differently...if the nausea meds are not working, ask for different ones!! I don't know why the nurse said he would feel 'great,' though! My husband had an easy first treatment, and he certainly didn't feel great!! Be sure to tell them all side effects he experiences.

[ANDRETEXAS]

I was lucky...I did not have nausea during my FOLFOX. I continued to do my 3-mile daily walk while I was hooked up to the IV (probably because the steriods kept me going). Then, at the 3rd infusion, the problem with cold things began. My hands would get shocked by the refrigerator. Drinking anything with ice felt like I was drinking shards of glass. I couldn't stand the taste of water and most foods. Pelegrino was a life saver. Around the 5th infusion, I was tired almost constantly. I slept up to 15 hours at a time. I had my infusions on Tuesday and had the pump removed on Thursday, so I rested the weekend. Of course, FOLFOX affects everyone differently. I just decided I was going to live my life in suspended animation for five months, and only thought about tomorrow. Because, as a clever Southern woman once said: "Tomorrow is another day." And don't think past tomorrow....... Andre

[Dana123]

My husband had significant nausea as well, it took him several cycles to figure out the best combination of the anti-nausea drugs worked best. He was given about 4 different types. He had the best success when he had the doctors give him aprepitant (brand name EMEND) in an IV prior to the chemo and again when he comes in to have the pump removed 48 hours later. He was generally able to go to work 2-3 days after the pump was removed, but was really tired so that was a challenge. Hang in there!

[KElizabeth]

I am sorry the first week was so tough. It does get easier. But it's never going to be fun. I always felt the worst on day one and day three of Folfox. I Really felt better once the pump was removed. Zofran and Compazine at home helped and the infusion was preceded by an IV anti nausea med as well. Adding something for the pain also helped me quite a bit.
I guess you will need to ask the doc for more symptom relief options and try for an improvement next time.

Good luck. Hugs.

[midlifemom]

Sorry hubby is having a rough go.
Review the anti nausea meds with your onc and the nurses.
If you're not already getting it, ask for Emend before your infusion. That's a wonder drug, though due to cost will have to be approved by insurance most likely.

[JMRWife]

Thank you everyone, for your experience and hope. He is doing better at the moment, so its a good moment. I keep telling him--and reminding myself--to stay in today, and let tomorrow take care of itself. This is a new concept for him, but I think he's beginning to see the wisdom in it.