Help plz- discouraged after 3rd Folfox

[Rebequita]

Thank you Rebequita - do you just take it for those 4 days each round? Or daily while on chemo?

Hi,
They administered it through my port just prior to each infusion, and then sent three 10 mg tabs home with me, one for each day following the infusion. This is a high dose, but my nausea was so severe and debilitating that I decided to stick with the higher dose. Then the nausea would pass/become manageable and I wouldn't need it until my next round. I did an infusion every three weeks, coupled with oral Xeloda for the first two weeks of each cycle. I'm not sure how I would have coped without the Zyprexa - it truly made all the difference. Hang in there!! Hoping they can find the right cocktail for your husband.

[kellywin]

I don't want to be pushy but want him to fight if there is any chance this can be temporary and he gain quality time. Am I being selfish? Do I need to step back here and respect his rights as the patient or is this where I need to hold my ground for his sake to get him through it?

1. Yes, step back. As others said, this is his decision, not yours. Chemo is an awful thing, not just physically, but mentally. You have no idea what it's like to go into that place and voluntarily let them POISON you. But you should try and encourage him to speak with the docs to get this nausea under control.

2. Head off the nausea as others said. Take everything as prescribed, don't wait for it to happen.

3. Fatigue - yes, sometimes I slept for an entire day and then the following day, didn't get off the couch.

3. Food. It tastes like shit on chemo. A few times the most I could manage was crackers. Even water tasted horrid.

Good luck to your husband.

[kandj]

My dad also sleeps a lot more on folfox than he did on folfiri and it also upset my mom. We
have to keep reassuring her that it is NOT the cancer, it's the chemo!!!!

I have noticed DH sleeps less on Folfiri then FOLFOX also. He slept through most the infusion on day 1, would be ok for part of day 2, just little lie downs here and there, until about 4pm, then it was off to bed. And on Day 3 (discharge day) he would sleep until discharge, I would take him in for discharge, would get fluids and steroids, sleep thorough that as well, then go back home and sleep. first day off chemo was a recoup day, and then he was much much better. Folfiri has him sleeping less, but still very tired. He does seem to eat more with Folfiri though. I always bring food to him on Day 1 at the oncologist office. I try to get him to eat a good lunch on day 2 at least, since dinner is hit or miss. He tended to not eat until dinner time on day 3 when on FOLFOX.

Chemo sucks. Try to be as supportive as you can, but in the end it is his body. I tell DH how much I love and admire him, I try to make everything else around him as easy as possible (kids, house work, etc) on those days. The kids know Daddy has to sleep a lot when he wears the funny bag (the chemo pump for the 5FU). It is so hard to watch someone you love, someone you have been married to for years suffer in this way. We both keep saying that this is going to be worth it to get him cancer free. But it just sucks.

[macpudd]

Hello HopeForJesse,
When I was on Folfox I was very tired and sleepy for five to seven days after infusion and would sleep for long periods. I was on Dexamethasone which helped with the nausea, but had to come off it as it made me feel very down, then went on Zofran which I found worked well except for constapation. Also when I ate salads and some fruits or spicy foods it increased my nausea, had to have a very bland diet, thankfully I had no problems with biscuits and sweets. So sorry that you and your husband are in this situation, hopefully things will improve soon.
Regards
Macpudd

[elise]

I used Emend with better success. But truly FOLFOX does suck.

I think every chemo patient hits a point where they wonder what the hell they're doing. Personally I needed to talk to someone else who had done it. Then I had to dig really deep. Encourage him to look at WHY he wants to continue. What does he have to gain.

Elise

[HopeForJesse]

Thanks again all. Spent the day at the hospital for dehydration and got some antibiotics too. Something else seems to be going on as DH had a fever. Waiting for culture tests but nausea slightly better now. Doc is checking with insurance for Emend but said he wants to try chewer Kytlin first. Really appreciate all of the insight.

[HopeForJesse]

'Cheaper' not 'chewer' - typed too fast!

[midlifemom]

Hope the antibiotics and IVs helped!