oxaliplatin-leucovorin-fluorouracil--6 months having jaw pains and first bite pain BAD!! my Onc. sai

mark440

anyone else have this pain?? need help!!! first bite of any food (room temp or above) feels like I stuck my tounge in a light socket for 20- 30 seconds....ANY IDEAS??

chicoturner

Anything is Possible
Hi Mark, I had oxy and I believe any problem you have could have or could be caused by it! I have heard of people having jaw pain, I was super sensitive. My hands were affected horribly and I burned them on my steering wheel. Any liquid colder then warm hurt my throat and I have bad nueropathy. Sorry, not trying to be negative, by oxy does come with a variety of interesting side affects. The onx's always seem to be somewhat surprised....
Hope you are doing better soon! Jean

taraHK

you are not alone
Hi Mark,
Your onc is wrong! I had that "first bite" side effect and I know that many others on this board who had oxaliplatin also had the same thing. I'm afraid I don't have much to suggest -- it sounds like you are already avoiding anything cold - which is important! For me, the effect only lasted a few days, each cycle. I hope the same is true for you (or better!). And yes for me it was just the first bite or two, then i was OK. But - ouch! I just had to brace myself....maybe try a sip of soup first? I was never that systematic....Good luck!

Tara

jillpls

ditto to jaw pain
I too have the pain on the first bite, especially if it's sweet related in any way i.e. fruit, candy etc.. It went away after about 4-5 days. So tell your onc to try the drug himself and see if he gets the side effects he says doesn't happen! Jill

pf78248

It is very common
Mark,

So sorry you have to go through with the chemo and it's side effects but my hubby David had the same thing for a day or two following the chemo you are on. It did get better for him as the treatment went on. It's obvious your oncologist has never taken that cocktail.

Just remember the chemo will hopefully kill those cancer cells and although it is tough, so many on this board have had great success with this same regimen. This board is the best to help you with side effect issues, so don't hesitate to ask questions.

Good luck and best wishes.

Priscilla in San Antonio

abrub

First bite pain from Oxali
I was warned about it from one of the chemo nurses, and had it really badly! Yes, it lasted 40 seconds or more (I timed it while doubled over). Felt like someone had smashed my face between two bricks - even when starting with a pea-sized bite of bread or pudding.

Your onc is WRONG on this one. My onc said it was uncommon - he'd never seen it as bad as I had, but it was in the literature.

TxKayaker

abrub said:

First bite pain from Oxali
I was warned about it from one of the chemo nurses, and had it really badly! Yes, it lasted 40 seconds or more (I timed it while doubled over). Felt like someone had smashed my face between two bricks - even when starting with a pea-sized bite of bread or pudding.

Your onc is WRONG on this one. My onc said it was uncommon - he'd never seen it as bad as I had, but it was in the literature.

Ditto also had the jaw pain
Ditto also had the jaw pain only lasted a few seconds but got my attention.
Mike

geotina

Mark
George had the same thing but only lasted several seconds, usually with the first bite of anything. Take small bites of food. Then his went away after the first bite or two and he continued with his meal. When drinking, use a staw that helped with the mouth and throat thing.

Additionally, run this thread off and send it to your doctor.

Take care - Tina

coloCan

geotina said:

Mark
George had the same thing but only lasted several seconds, usually with the first bite of anything. Take small bites of food. Then his went away after the first bite or two and he continued with his meal. When drinking, use a staw that helped with the mouth and throat thing.

Additionally, run this thread off and send it to your doctor.

Take care - Tina

Among others, had this problem too....
I would take small bite,deal with the resulting feeling for 10-30 or so seconds and then continue eating with no problem.....For drinking, I would try to aim liquid down middle of mouth to avoid touching inside of jaw (didn't use straw to avoid additional heartburn/gas.) Problem undoubtedly caused by oxi, as it ended when oxi did......best of results with your treatment,Mark......steve

abrub

coloCan said:

Among others, had this problem too....
I would take small bite,deal with the resulting feeling for 10-30 or so seconds and then continue eating with no problem.....For drinking, I would try to aim liquid down middle of mouth to avoid touching inside of jaw (didn't use straw to avoid additional heartburn/gas.) Problem undoubtedly caused by oxi, as it ended when oxi did......best of results with your treatment,Mark......steve

It was definitely the oxali
The pain would start during my infusion. I had my Oxali infusion slowed to 6 hours to help minimize (!) side effects, and if I brought a snack and ate it after the first couple of hours, the pain would be there.

At this point, as the initial infusion was only Oxali and Leucovorin, it had to be the Oxali. You can look up "Oxaliplatin and Jaw Pain" or "Oxaliplatin and Trigeminal Neuralgia" - it's real. I cringe just recalling it.

Sundanceh

Magnesium Sulfate
Hello Mark

You can have your onc give you an infusion of Magnesium Sulfate the next time your Oxy treatment is scheduled.

It does not work for everyone, but if it works for you, it will immediately help you with neuropathy issues, drinking cold liquids, and can lessen the jaw sensation.

It worked miracles for me and I've had other folks that I've suggested this to try it, and they are satisfied customers:)

It will not hurt anything to try - and if it works, it will make the rest of your treatments more humane and bearable.

All the best - Craig

biglaur

I had it too!
yikes, it was bad. I described it to my doc as the feeling I got eating "Pop Rocks", the candy my children liked that "exploded" in your mouth. Try sipping through a straw...sometimes if you can avoid the mouth and go straight to the throat it doesn't hurt quite so much. It goes away, thankfully, so just hang in there.

Kathleen808

Mark
Mark,
**** had this first bite pain as well when on Oxi. Do let your onc know so he doesn't tell others there is no such thing. Docs have a lot to learn and they can learn it from patients.
Take care.
Aloha,
Kathleen

KATE58

Kathleen808 said:

Mark
Mark,
**** had this first bite pain as well when on Oxi. Do let your onc know so he doesn't tell others there is no such thing. Docs have a lot to learn and they can learn it from patients.
Take care.
Aloha,
Kathleen

I had the same jaw pain when
I had the same jaw pain when I was on folfox.
maybe the doctors should take a few doses of chemo so they
will know what it is like.just because it is not listed in
the known side effects,means the people in the trials didn't complain about it.
but oh ,it is real.
why don't you print this page and take it to your onc to read ?

khl8

KATE58 said:

I had the same jaw pain when
I had the same jaw pain when I was on folfox.
maybe the doctors should take a few doses of chemo so they
will know what it is like.just because it is not listed in
the known side effects,means the people in the trials didn't complain about it.
but oh ,it is real.
why don't you print this page and take it to your onc to read ?

Jaw Pain here too!!! I like
Jaw Pain here too!!! I like the idea of having the doc's take a dose or two!

herdizziness

Yeppers, I have the jaw pain
Yeppers, I have the jaw pain as well, lasts a few chews then goes away. The first chew is always the worst. It has lasted up to 5 days for me, also, crying hurt too.
You're not imagining it. It's for real.

suelanders

Jaw pain here too!!!
I feels like biting into a lemon that is very sour and it hurts for about 30 sec. I can't stand to eat because I know it is going to hurt. I am going to talk to my Onc tomorrow about stopping my treatments. It doesn't seem worth it. I am currently cancer free and don't see the point.
Sue

Kathryn_in_MN

I had it too
This is common with oxaliplatin. I went through the same thing - posted on a couple boards and asked and found several others with it.

I don't know why, but the first bite pain did stop several cycles in. It only happened once in a while, rather than with every first bite. It does go away after chewing for a bit. Another one of those "suck it up" side-effects.

porkchopqueen

Pain
Mark, this is Porkchopqueen, we started out together on our chemo cocktail and were going to party like rock stars remember??? Just wondering how you are doing. I also have jaw pain and the cold or even maybe cold food or drink is killer pain from the oxi!! My dr is giving me calcium and magnesium sulphate but it doesn't help, but he said it wouldn't hurt either. I will be getting a scan next week to see how things are going. Have you had a scan yet? I have been ever so tired and just as I get enough energy to do something, it is time to take another treatment! My cold sensitivity last until the Friday before I have another treatment on Monday. It is tough. My best to you and stay in touch. Queenie

P_I_T_A

He crazy
I got the ole' "lock jaw" a few times. Not everytime, but with a few different foods, for the 1st bite or 2 then it went away.

-DJ

RB101

Jaw Pain and Oxaliplatin
It's almost a year and a half since this thread ended but I was very happy to find it. Am receiving Leucovorin-Oxaliplatin-5FU every 2 weeks for Stage III colon cancer (left hemicolectomy 6 weeks ago). Today was my second treatment session. This evening - jaw pain on eating (first few bites) just as described. It is extremely painful but goes away after a few chews. Worse with hard food and chocolate. I am really worried it will get worse but encouraged by replies to Mark that it is only for a few days after each treatment and then gets better. Jaw pain after Oxaliplatin is definitely REAL!