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oxaliplatin-leucovorin-fluorouracil--6 months having jaw pains and first bite pain BAD!! my Onc. said theres no such thing???

mark440's picture
mark440
Posts: 63
Joined: Jan 2010

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's picture
chicoturner
Posts: 285
Joined: Apr 2009

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
Posts: 1961
Joined: Aug 2003

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's picture
jillpls
Posts: 241
Joined: Mar 2008

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's picture
pf78248
Posts: 206
Joined: Jul 2008

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's picture
abrub
Posts: 1528
Joined: Mar 2010

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's picture
TxKayaker
Posts: 168
Joined: Jun 2009

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

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

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
Posts: 1835
Joined: Oct 2009

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's picture
abrub
Posts: 1528
Joined: Mar 2010

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's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

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's picture
biglaur
Posts: 65
Joined: Apr 2010

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's picture
Kathleen808
Posts: 2269
Joined: Jan 2009

Mark,
Dick 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's picture
KATE58
Posts: 300
Joined: Nov 2009

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
Posts: 809
Joined: Nov 2009

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

herdizziness's picture
herdizziness
Posts: 3387
Joined: Apr 2010

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's picture
suelanders
Posts: 25
Joined: Apr 2010

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's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

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's picture
porkchopqueen
Posts: 37
Joined: Feb 2010

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's picture
P_I_T_A
Posts: 133
Joined: Oct 2009

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
Posts: 1
Joined: Sep 2011

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!

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

Hi: There is lots of information on this discussion board about the side effects of oxaliplatin. I even downloaded the entire document provided by the drug company and about 40 pages of it are devoted to neuropathy and its various forms. I agree - let your oncologist try it!!!!! I suffered with these symptoms (cold intolerance, first bite pain, shaking, sore feet and hands) at first but had my dosage and infusion rate reduced. I also take Vit B6, calcium/magnesium, alpha liloic acid, L-Glutamine (5 grams/day), and haven't had many problems and I'm on my 9th treatment of oxaliplatin-irenotecan-5FU. I can even eat ice cream right after treatment. Doesn't work for everyone but it sure works for me - I got the information on this discussion board.
Cheryl

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