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Day 2 of Folfox and oxy

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Well guys day 2 of jorge's chemo . And the chemo he is getting is Folfox oxy and on our way home from the cancer center he asked for something to eat and he omg already and I said what and he said the mouth pain when he eats . What fun this is going to be thanks all for reading love you all

Marianne313
Posts: 124
Joined: Mar 2011

My aunt has the "first bite" pain (although I think it's more than just the first bite) and it sucks. I can't imagine having pain and knowing it's coming when you're hungry and going to take a bite of something. I'm sorry he's having this. My aunt also has the extreme sensitivity to cold, but only drinking and touching cold, she's fine with the AC on and doesn't even use a sweater but her mouth, throat, and fingers are very sensitive to the cold things, food and drink.

Good luck to you and to Jorge.

Marianne

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

then it passes, but it can be so intense as to make you fearful of the next bite. I timed the blinding pain lasting 40 seconds, and yes, it can start immediately. Have him try to get past the first bite with a small bit of pudding or a single pea - something tiny. It will still cause the pain, but he won't be stuck with a mouthful of food. Drinking wasn't a problem for me, but even pudding caused first bite pain.

It will subside after a few days. I have such empathy for Jorge!

Alice

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

I had it when I was having the same chemo as Jorge. I used to take a tiny sip of orange juice before starting to eat--the pain didn't seem as bad with the little bit of OJ, and after that initial pain subsided I could go on to eat without much problem. Similar to Alice's method of a tiny bit of pudding.

relaxoutdoors08
Posts: 520
Joined: May 2011

I had the pain in the jaw at first but later treatments it was not there. Later treatments it was the nueropathy in hands and feet. If he has mouth sores Miracle Mouthwash works wonders. Tell to take one treatment at a time and enjoy the week off between treatments.
NB

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I alway ate when I first woke up in the morning and started feeling like crap. I also ate at other times but it just seemed to go down easyer in the mornings. The way I look at it while on chemo eat whenever you can.

pamness
Posts: 515
Joined: Nov 2007

I hard a hard time with the Folfox treatment. Not the 5FU but the Oxalipalatin. I ate what I could - I called it the white food diet. Potatoes, bread, ice cream ( a few days after treatment, could not tolerate the cold), apple sauce, etc. For some reason Pizza Margherita was usually OK. Don't get me wrong, I lost a ton of weight. I ate what I could. I am currently four years out of treatment. My thought is eat what you can, after chemo you can worry about "healthy eating." For me, fish and meat, not so much during treatment. Chicken sometimes. Eat what you can and don't worry about the time of day or what you can eat. Just eat.

Pam

pamness
Posts: 515
Joined: Nov 2007

I hard a hard time with the Folfox treatment. Not the 5FU but the Oxalipalatin. I ate what I could - I called it the white food diet. Potatoes, bread, ice cream ( a few days after treatment, could not tolerate the cold), apple sauce, etc. For some reason Pizza Margherita was usually OK. Don't get me wrong, I lost a ton of weight. I ate what I could. I am currently four years out of treatment. My thought is eat what you can, after chemo you can worry about "healthy eating." For me, fish and meat, not so much during treatment. Chicken sometimes. Eat what you can and don't worry about the time of day or what you can eat. Just eat.

Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm sorry this is going on. Hoping he'll get through it okay. I know he has a good woman by his side.

*hugs*
Gail

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all: I've just finished by 5th treatment of FOLFOXFIRI (oxaliplatin and irenotecan). During the first treatment as I've said elsewhere I had terrible first bite pain, mouth pain, cold sensitivity (a cold glass of water almost did me in). I talked to the oncologist and he reduced my oxaliplatin dose by 40% and reduced how fast the chemical was infused into my body. As well, I followed the advice of several on this discussion board and take 5 grams of L-Glutamine (Fermented) a day in juice or a smoothie, Vit B6 and Cal/Mag and Alpha Liloic (or whatever it is called) Acid twice a day. And since the first treatment I have had very little neuropathy, just the odd first bite thing and no problems drinking cold water, eating cold food, no foot sensitivity. Diarrhea yes, sweating yes, fatigue yes, but not neuropathy. I am a happy person as the cold thing in this heat would have driven me crazy.

I rinse my mouth often with Club Soda. As for food, well my main problem is now not neuropathy but rather diarrhea so I follow the BRAT diet when I have to and avoid the "bad" foods like fried stuff, oily stuff, etc. I too enjoy a pizza every once in awhile as it makes me happy - my favourite is Hawaiian.

So try lots of different things and talk to your oncologist. Usually they have solutions.

Cheryl

luvmum
Posts: 457
Joined: Dec 2010

I am so sorry to hear that Jorge has mouth pain. Whenever my mum has Folfox, she has mouth pain too. She tends to lost her appetite at the same time. I really hate this beast..... My mum can only eat some tasteless jello type of food during chemotherapy.

Best wishes to you and Jorge,
Love and hugs Dora

dianelynn41's picture
dianelynn41
Posts: 71
Joined: Jan 2011

My hubby Roby started his Folfox chemo today. He's got the pump 3 days every other week. Lots of good advice I'll be letting him know what to expect, the onc and nurses never mentioned the first bite pain.

Tell Jorge to hang in there.

Diane

Babygreens381
Posts: 3
Joined: Jul 2011

The Pain usually don't last long. I found that the sensitivity to Cold was the hardest part. Ask you Cancer Center for recipes that will help him through this Stage. I found that when asked they were there to help you all the way. In my thought. Hugs to you both.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

first bite pain was the worst, it would just about drop me to my knees. An electrical jolt straight through your jaw. The good thing was it stopped about half way through chemo for me. I hope it goes away soon.

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