FOLFOX-7, delayed/extended nausea, and taste/appetite

[MAJR]

Hello all - this is my first post since being diagnosed stage IV back in July of this year. However my wife (a superstar many people on this board know as "some") has engaged this forum regularly the past few months, and I'll take this opportunity to extend my gratitude to everyone who has so kindly and energetically responded to her/our many concerns and questions.

My curiosity concerns the effects of FOLFOX-7 over time, and what people's experience has been with delayed nausea and changes in taste/appetite in the days following treatments. I'm six days on from completing my 7th cycle, and have gone through a few different approaches to nausea management to date. I'm convinced that - though the treatments seem to be getting easier - the delayed or lingering nausea seems to extend a little further out each time. Also, the past two cycles I'm really noticing changes in how food tastes. I can't say I notice a metallic taste, but there's something like the feeling you get when you burn your mouth or tongue, but without the pain. I find I crave warm savory foods, and salads. My appetite goes from longer periods of mild nausea with no interest in food to suddenly being ravenously hungry for the types of food I mentioned.

If there's a question in here, I guess it's that I'm curious whether people's experience with these types of symptoms tends to ebb and flow, level off, or continue to escalate, or taper off.

My nausea regimen to date:

Infusion meds same each cycle: Fosaprepitant(Emend for IV),Decadron,Zofran IV
Take-home meds by cycle:

1&2: Ondansetron(Zofran)&Lorazepam(Ativan) oral as needed (first treatments, no basis for comparison, but requested alternatives)
3: Emend oral, Ondanestron&Ativan oral as needed (getting worse)
4: Granisetron patch (yes,really), Ondanestron&Ativan oral as needed (still sucks)
5&6: Dexamethasone day 2, 3, 4 & 5, Ondanestron&Ativan oral as needed (seemed to extend the recovery period by few days, and side effects not worth it, and still nauseous)
7: Ondanestron&Ativan oral as needed (maybe I'm just getting used to it, but this seems acceptable)

I realize my sample size is both small and chaotic. Still, I'd appreciate your thoughts.

Thanks all,
Mark

PS - It may have been mentioned here before, but I do highly recommend The Cancer Fighting Kitchen by Rebecca Katz. Educational, and delicious (the recipes, not the book).

[KarMel]

I think you have tried all the various combos I have heard mentioned.
In the end, however , what I remember is that each cycle kept getting worse, and by 8 or 9, I would stick around in cancer center for extra I'VE fluids and I'VE zofran, after I got the pump disconnected.

Lemon drops helped the bad taste in my mouth.

I think it would have been interesting to try marijuana, but my state does not allow. Have you considered that?

Welcome to the boards, glad you are posting, and superstar wife, too.

[Kathryn in MN]

I have had severe nausea problems on all chemo.

My routine on FOLFOX was IV premeds of Emend, Aloxi and Decadron. Then I had Emend pills at home for days 2, 3, 4 and 5. That is longer than the protocol - I needed it longer, and it worked longer. But after that, although I still had nausea, Emend did not help anymore. Zofran gave me intolerable headaches when I was on FOLFOX. I'm allergic to Compazine. I did have Ativan, and took it sometimes at night if I was tired and had trouble sleeping due to nausea. Some cycles I got fluids and more Aloxi a few days after disconnect, and that always helped.

Right now on Irinotecan and Zaltrap I get premeds of IV emend (now a longer lasting formula so I do not take the pills), Aloxi and Decadron. I return 3 days later for more Aloxi and fluids. This is helping.

On FOLFOX I found that I had to eat whatever I could keep down. I survived off of mostly Cream of Wheat, bananas, and mashed potatoes for the first week of every cycle, along with warm apple cider and room temp blue Gatorade (which eventually I could not tolerate anymore). I couldn't eat my favorite foods at all. Veggies just didn't taste right and wouldn't stay down most days. One time all I ate for a few days was banana cream pie and orange soda. It made me crazy because before chemo I was a very healthy eater - lots of fruits and veggies, mostly raw and organic, whole grains and fish. I could still eat fruits, but instead of my veggies and fish, I had sugars that were not normal for me.

A few things that helped me with the off tastes during FOLFOX were to use plastic eating utensils and drink from a straw. It made a difference in how much fluid I could get in, and helped me eat some things that would not go down when I used metal silverware. Also putting something in my water to flavor it was necessary. I have always drank large amounts of water, but couldn't get water down - it came right back up. I found adding about 1/8 to 1/4 Simply Orange Juice or Simply Lemon or Cranberry juice helped tremendously. Textures made a difference to me on FOLFOX, and I needed bland foods - I preferred softer foods - applesauce, potatoes, Cream of Wheat, etc. (On Irinotecan textures don't bother me, other than some mouth discomfort from mucositis, but I need stronger flavors - spicy or sour is often better than bland, and sometimes I crave salt, which I usually do not crave or have much of. The foods that worked well on FOLFOX don't really work that well now.)

Since you are having the lingering nausea issues too, I would ask about getting extra anti-emetics at some point after disconnect. Maybe disconnect day - maybe a day or two later - depending on when you think you need it. Also, since you didn't mention Aloxi, ask for it. That may help you. Compazine is another option, although even back when I could use it before my allergic reaction (many years ago for severe hyperemisis) it made me really fuzzy and not too functional. I've found Zofran helps me during radiation, doesn't help me with Irinotecan, and gives me headaches too severe to use it with FOLFOX. Each drug affects each patient differently, and each one works differently within your own body depending on what other drugs are going into it. We are walking science experiments.

[Busymamaof3]

Hi Mark.

I have communicated with your wife - you and I are in the same boat unfortunately. I am a bit behind you - just have had my first round of folfox and avastin on Tuesday. Tuesday and Wednesday weren't so bad so I thought I might be okay but then last night and today - ugh. I have nothing to add here - trying to find my way with meds to see if I can get some relief from the nausea. Really just saying hi from my spot on the couch and hoping tomorrow is a better day.

[MAJR]

Thanks all. for your input. It's certainly a challenge, and honestly if it didn't get much worse than it is right now then I'd cease my complaints. Considering what many go through my side effects are easy.

Cheers and best wishes to all.