Help plz- discouraged after 3rd Folfox

[HopeForJesse]

Hello- I am looking for encouragement and experiences with extreme nausea after 3rd dose of FOLFOX. DH had minor side effects to first 2 treatments but as some of you warned, the cumulative nature of this has caught up to us in round 3. He has not been able to hold anything solid down in 3 days. Very tired, diarrhea and extreme nausea. The dr has ordered a motion sickness patch in addition to the zofran, compazine and Ativan that have been in place. DH does not want any more chemo ( infusion every 2weeks) but I really want him to get 3 more so he can have next scans done and see if this is working at all. 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? Thanks in advance for your time and praying for you all.

[jhocno197]

If he doesn't want any more chemo, I would not try to force him. It is his decision.

Maybe you can make a bargain with him, though. That they will adjust his meds, and he will give it one more shot? Is he starting the nausea regimen the day before, & not waiting for the nausea to kick in to start stuff?

[kandj]

Is he getting Emend in his pre-chemo meds? they added that to my DH's regime after round two. Like your DH, he could not keep anything down. It has been a lifesaver and really helped.

[BeansMama]

I have found with the Folfox you really need to head the nausea off before it starts, take the meds regularly even if you aren't nauseous. He may benefit from starting the meds before the treatment. My onc offered an iv med that would last a few days, can't remember the name of it, but I haven't needed it yet.

I found piggybacking Zofran and Phenergan help the most, I take the Zofran then 4 hours later take the Phenergan then in another 4 hours the Zofran again.

Hopefully your husbands dr can find a combo that works for him.

[midlifemom]

MK,
It's a tough position you're in.
Butt, side effects can be managed. The only time I had a real problem with nausea was after my first folfox. Ended up in DRU for drugs and fluids. After that I started getting Emend and that was the end of nausea. I now take 2-3 compazine per cycle and that is it. Contact your onc tomorrow and say you want emend. Also, if Jesse is still not holding much down, going in for iv fluids may help.
For the diarrhea, what are you using? If Imodium isn't doing the trick (and you can take more than what's listed on label, I think 8 is the max per day) ask for Lomotil. Getting the diarrhea under control can help with the fatigue.
As for fatigue, I found a subscription to Netflix to be my best friend.

Regarding stopping - perhaps Jesse would go for trying one more with these extra meds - the lomotil and emend.

Let us know if you have more questions or just need to vent.

[HopeForJesse]

Thanks all. He does get Aloxi via iv with the chemo but I will ask about Emend. They sound similar but something just is not working this time even with the anti-nausea before and after.

[kandj]

Thanks all. He does get Aloxi via iv with the chemo but I will ask about Emend. They sound similar but something just is not working this time even with the anti-nausea before and after.

Aloxi and Emend are different. DH's oncologist said about 10% of patients aren't completely covered with just Aloxi and zofran/phenegran. He added it to the premeds and that was the combo we needed. The Ativan helped as well. DH doesn't take the zofran because it constipates him, but he takes phenegran starting the night he gets home from Day 1.

[canadiandaughter]

My dad had similar issues with the folfox. They reduced his dosage twice now and also added gravol to his anti nausea meds and that seems to have done the trick. He starts taking his meds prior to infusion and takes them for a few days after disconnect. I hope you can come up with something that works for your husband. My dad was very discouraged as well, but his last 2 infusions have been a lot better.

[HopeForJesse]

Thanks again all. Quick question: is it normal for DH to sleep the entire day? He has managed so far to hold down 1/2 chicken salad sandwich and some fruit ( was up for 15 minutes to eat at 2:30) and got up again later at 5:30 for 15 minutes to shower. Otherwise has been sleeping or resting all day. Getting worried but hoping the rest is healing the chemo effects.

[Nik Colon]

Thanks again all. Quick question: is it normal for DH to sleep the entire day? He has managed so far to hold down 1/2 chicken salad sandwich and some fruit ( was up for 15 minutes to eat at 2:30) and got up again later at 5:30 for 15 minutes to shower. Otherwise has been sleeping or resting all day. Getting worried but hoping the rest is healing the chemo effects.

Yes, extreme fatigue is normal unfortunately

[HopeForJesse]

Thank you Nik for the quick reply and reassurance! I was not sure to what extent and getting very worried. Hope it subsides soon so he gets some good days before we have to discuss next round.

[Rebequita]

I just finished my last round (6th) of Folfox/Oxaliplatin. I had a really tough time with severe, delayed nausea. I tried Zofran, Compazine, Ativan, and Emend, and none of those regiments had any effect on my nausea. On Round 4, they implemented Zyprexa, which I took for four days following my chemo infusion. It knocked me out for a good five days, and it also brought my nausea down from a 10 to a 6. It made the last three rounds of chemo tolerable for me.

http://www.medpagetoday.com/HematologyO ... rapy/32735

I think most folks have good results with Emend, but I wanted to share in case it doesn't end up working for your husband.

[HopeForJesse]

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

[BeansMama]

Thanks again all. Quick question: is it normal for DH to sleep the entire day? He has managed so far to hold down 1/2 chicken salad sandwich and some fruit ( was up for 15 minutes to eat at 2:30) and got up again later at 5:30 for 15 minutes to shower. Otherwise has been sleeping or resting all day. Getting worried but hoping the rest is healing the chemo effects.

Definitely normal! I am useless the day after my infusion, I do nothing but sleep. I am usually better the second day, still tired but I don't need to sleep. Once the pump is disconnected the fatigue lessens for me.

Everyone is different though. I seem to be having more nerve issues than other problems.

[canadiandaughter]

You might want to get some boost or ensure to help keep him getting some nutrition. 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!!!!