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Severe jaw pain/spasms on Oxy?

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Anyone else have severe jaw pains or spasms while on oxaliplatin?
What cycle did it start? Did it get worse, or stay the same?

I'm asking so I can give this info back to my onc, who was skeptical that my jaw pain and spasms are from the oxy. I KNOW they are. I can live with them, as long as they don't become permanent.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Kathryn, I had read MANY reports of severe jaw spasms during chemo and some jaw pain after. I never had severe pain when opening my mouth or taking a bite, but it did spasm and hurt. I have an ache in my jaw bone now, after chemo, but I'm also bad about grinding my teeth in my sleep and sleep with a night guard/ mouth piece.

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

Hubby George did not experience jaw pain but he did have what I might describe as funny sensations on his tongue, nothing severe like pain. He decribed it as a numbness, tingling, mostly near the tip. He did not have the mouth sores. I have read where some experience jaw pain when they take the first bite and then it goes away. Sorry I could not be more help. Hang in there, one day, one treatment at a time.

just4Brooks's picture
just4Brooks
Posts: 987
Joined: Jun 2009

Hi Kathryn. After my 3rd chemo theatment (Oxy) My fase went numb for 4 days. I could hardly tell if I was blinking. I told my onc and he backed my Oxy down 20% without fear in changing my outcome. No problems sense and I'm now just got done with my 5th treatment.

Brooks

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Kathryn,
I started to get first bite syndrome after treatment #3. It only happens sometimes, when I take the first bite of something. I get a pain/tingling sensation on both sides of my jaw where it hinges. It's usually worse on one side. I can live with it and will be going for treatment #6 next week. I'm almost half way there.

Don

polarprincess
Posts: 210
Joined: Aug 2008

i have been talking with a lady that lives close to me that is stage IV and had severe pain and spasms, and her doctor took her off OXY for good after just that one cycle. Said it could cause severe permanent damage if side effect was already that pronounced. I had the pain at first bite too but i wouldn't say it was severe.

christinecarl's picture
christinecarl
Posts: 539
Joined: Sep 2009

I mentioned it in my post below along with my allergic reaction. When I first started chemo it happened, it eventually stopped. My nurse had never heard anyone complain of it before. Very painful, I do not believe it lasted more than half of my treatments, so I hope it goes away for you too.

SandyL
Posts: 220
Joined: Feb 2009

according to our oncologist. It happened during the first treatment for my husband and continued for a few days after the pump was removed, tho it lessened in severity once pump was removed. He no longer has the jaw spasm - he's been off the txs since June. I would say that they gained in severity with each treatment he got, tho. Dr. said that a few do get these spasms. Isn't it weird that it's just with that first bite? So very strange-I told him that he should not stop eating. Cause you forget about it until you engage in that first bite.
Sandy

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I'm sorry to hear this. On top of everything else you'r going through! It sounds common enough to be connected to oxy.

I didn't have this problem but do remember having my dose reduced 20% to reduce other side-effects while I was on it. I was told the same thing as Brook. There would be no change in outcome.

Thinking of you... Rob; in Vancouver

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

kathryn I too am sorry you are having such a hard time. Oxy is not easy that's for sure and it does give strange side effects. I kept a little diary each month so I could go over those with the onc. I had a reduced oxy dose starting round 2 but it was still rough. Lots of nausea, fatigue, all the cold neuropathy. I did not have the jaw thing but lots of people here did. My eyes were twitchy, watery, would not focus and in cold air they felt like they were frozen, same with face. I ended up getting a big balaclava that covered the whole face.

hang in Kathryn
best wishes,
~mags~

P_I_T_A's picture
P_I_T_A
Posts: 133
Joined: Oct 2009

Yup, I got it the night after my 1st treatment and the following day. Taking the first few bites, the back of my jaw would just lock up, but quickly subsided. Try some hard candies to suck on, that seemed to help me. As long as those muscles were used, no spasms. I'm only on my first Tx, so I can't weigh in on the long term.

-DJ

Julie 44
Posts: 479
Joined: Oct 2008

I also had jaw pain when I took the first couple bites.The back of my jaw would hurt so bad for a moment or two then it would go away...I had this from my 3rd treatment until my 12th. Now that my treatment is over I have not had that problem anymore......JULIE

Annabelle41415's picture
Annabelle41415
Posts: 4187
Joined: Feb 2009

I had this too. It would seem that my jaw would lock up for several seconds and the feeling was strange like I had 100 sour lemons in the back of my throat. I would end up rubbing both sides of my mouth just so that I could get my mouth open. Mine continued all through chemo and just now is improving. Hardly ever have it now. Good luck!

Kim

Fight for my love
Posts: 1302
Joined: Jun 2009

My hubby had jaw spasm for a couple of days after the first round was done,then it just went away.Only the first couple of bites,he felt very strange,then he could eat normally.We reported to the oncologist,but he didn't make any comments.It is from Oxy for sure.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

and if he doesn't believe it tell him to try a little oxy and see for himself. First treatment should do it for him...LOL...It will go away about 2 weeks after the oxy is overwith.....I had it myself and send him in here if he doesn't cooperate, we'll rough him up a little for ya...LOL....Good Luck {{hugs}}}}, Clift

Fight for my love
Posts: 1302
Joined: Jun 2009

LoL,Clift,you make me laugh.Haha.That's what I have said to my husband.Sometimes I feel a little annoying because when I mention something,the oncologist says another or he jsut doesn't give a response.One time I was asking my husband if this was because I am Chinese,so he has discriminations to me???My husband says no.Anyway good point,Clift.I am sure if the oncologist would have ever tasted what oxy like,he would not ingnore.Thanks,Clift.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'd like to tell him to "try" a little as recreational drug use...

bdee
Posts: 305
Joined: Feb 2009

I, too, had severe jaw pain but only on the first bite of anything. I was only able to do 4 rounds of oxy because of other, worse, reactions.
What's funny is my doc and his nurse said they had not heard of it before. But look at the responses on your page. It has to be wide enough spread to be known by all doctors.

Debbie

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Kathryn,

I wonder if the doctors are unwilling to acknowledge any side effects that are not specifically named in the drug monograph! It mentions nerve and feeling problems in the mouth and throat, but not the jaw pains or spasms in particular.

The detailed info on Oxy can be accessed on our BC Cancer Agency website here...

http://www.bccancer.bc.ca/NR/rdonlyres/D0132051-8601-4B5E-89A0-5BB3B4739C83/31059/Oxaliplatinmonograph_1Nov08_formatted.pdf

It notes that infusions of cal/mag before and after Oxy infusions can help with peripheral neuropathy...

"To reduce the incidence and severity of peripheral neuropathy, patients should be considered to receive infusions of 1 g of calcium gluconate and 1 g of magnesium sulphate prior to and following oxaliplatin treatment for metastatic colorectal cancer, especially if peripheral neuropathy has developed while on oxaliplatin treatment. Calcium/magnesium infusions do not appear to reduce the efficacy of oxaliplatin-based chemotherapy.36-38 However, they are not recommended in patients with hypercalcemia or receiving digoxin or thiazide diuretics. Calcium can precipitate arrhythmias when given with digoxin and increase the risk of hypercalcemia with thiazide diuretics."

Infusion is done... good days ahead!

TTFN... Rob; in Vancouver

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

For me it came on after TX #2 or 3. Acupuncture greatly relieved the pain, thouigh i would have to watch what I bit into. Made a big mistake one morning last winter when I put a piece of cold gum in my mouth and took the first bite.

Leslie

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

That the nerve ending sensory in the roof and cheeks and tongue all are directly sent to the jaw then dispersed to other parts of the extremities of the face but upon reaching the jaw the muscles draw such as when the mouth gets the lemon juice and tries to contract the jaws contract upon anything new (or first bite) because the oxy heightens the nervous system or makes it exceptionally aware of different tastes and thus introduces a nerve sensory reaction of jaw spasm. Its the exact same feeling as a lemon has to someone not on oxy so in my Dr. like deduction I think its neuro-sensory introduction personified...

Now back to the regularly scheduled program.............

Patteee's picture
Patteee
Posts: 946
Joined: Jul 2009

I am not sure that oncologist are the most versed in side effects. It seemed like mine wanted to immediately rule out everything (had to see an eye doctor for my eye pain, which included my eyelids swelling up like balloons)- that doctor said, yeah they are bad, but this is what chemo does to people's eyes. He gave me eye drops. Now, it seems to me that I didn't need to see an eye doctor about that.
I do think that there are so many variations of things and extremes that chemo does to the body. I didn't have the jaw pain at all, but I sure had a lot of other things. The mouth sores and thrush I had so bad- one of the reasons it got so bad so quick? Two of the oncology nurses looked in my mouth (ah, they tried, mouth too swollen to even get my teeth apart) and said, "start by rinsing your mouth with warm salt water and let us know tomorrow how it is". Basically, they patted my hand and made me feel like I was a wus. 24 hours later one of the inpatient oncology nurses was getting me set up for fluids. My mouth and tongue so swollen I couldn't speak. She immediately stepped to the phone in the room I was in and called for STAT admission orders. I remember thinking, OMG, somebody actually thinks this is as bad as it feels.
So, guess what? I definitely support you being vocal- because they do walk a fine line in expecting issues, but not knowing when they have gone overboard with them. It is those issues that help determine when they cut the oxy and how much.
Hope you are feeling better. I always felt my worse right after the pump was dc'd and for about 5 days after. That you are starting shots tomorrow-wow- hang in there and hang on as the ride is bound to get bumpy.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I copied and pasted into an email that I sent to my colon cancer nurse navigator. She really goes to bat for me when I need her. I really appreciate all of your replies - an opportunity to educate a good oncologist on somethings he hasn't experienced before.

He's a tough one - a fighter that wants to go full speed ahead against cancer. Everyone in the health industry that knows him has told me they would have him as their oncologist if they needed one. But he does need to back off when necessary. He already showed that he will do that by removing my bolus of 5-FU last Thursday. I think once I fill him in on all the issues from round #2, plus your replies of oxy jaw pain, etc., he will back off on the oxy for me also. I just can't tolerate as much as they expected me to. And I am usually VERY tough - so this is hard on us all (myself, my family, my medical team) - me backing off. But I do want to be alive with some quality of life when I'm done with this battle.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

My oxal infusion was 3 1/2 hrs long. If they lengthen it to say 5-6 hrs it will make the stay longer but they seem to think that the side effects are a lot less, or they can cut it back 20% and infuse longer. Sometimes not by fault of their own but just the magnitude of patients they may try to see if infusion time can be quick to get more patients their treatments . If you don't have any trouble then great it moves it along faster, but if you are one of the ones that have bad side effects then you are the percentage that it can be infused at a slower rate. It won't hurt to try if you want to trade longer treatment time for possible less side effect.......Good Luck to whatever you choose.....Clift

lesvanb's picture
lesvanb
Posts: 905
Joined: May 2008

I agree with Clift about a longer infusion time. My total time getting the oxy on the first day was 8 hrs. 30 min calcium/mag before then the oxy cocktails with the dexamethasone and anti-nausea, then 30 min calcium/mag at then end and then hook up the 5FU pump plus bolus. One time one nurse who I didn't respect tried to speed up the infusion time but I noticed right away (light-headedness was a first clue) and had it slowed down back to the regular time. I did not have bad side effects like you are having Kathryn, but I do have residual grade 1 neuropathy which is slowly slowly getting better (now almost 6 months from last infusion).

Leslie

Steve Z's picture
Steve Z
Posts: 51
Joined: Sep 2009

I feel for you. My first round was last week. I took a bite of donut hole while getting my Oxy and had the jaw pain. I've had it every meal since. No more snacking between meals. Three meals a day no more, no less. I find it's a little easier when I start with a small bite of something bland like a cracker. The pain is still there, but it's quick with less intensity. When I was disconnected from the pump I told them about it and they asked if I wanted to extend my next appointment just as Clift suggested. I'll let you know if it works. Let me know if something works for you.

donjen's picture
donjen
Posts: 1
Joined: Mar 2013

I know this forum happened a few years ago now but we've only just come across it.  I'm Jenny, the scribe for my husband Don who has pancreatic cancer but is currently undergoing his 2nd cycle of three of Oxaliplatin and Xeloda.  He's finding that the most distressing side-effect of this treatment is the agonizing 'first-bite' jaw spasms following the infusion of Oxaliplatin on Day 1, however this problem gradually tapers off over the following week.  We're finding that having a very small first mouthful of food and letting it rest on his tongue before actually eating seems to cause the pain to be less severe.  He's also experiencing intolerance to anything that's cooler than lukewarm and has the pins and needles feelings in his extremities.  Maybe he'll develop a liking for warm orange juice & smoothies in time ... I don't think!!!

We're amazed that all the medicos and nursing staff profess to being unaware of this remarkable side-effect, especially when there are so many forums out there with folk describing this phenomenon.

The other marked side-effect from this combined treatment is Don's constant feeling of lethargy & weakness, however all-in-all we're truly grateful that he's still here with us 16 months post-diagnosis.

I've posted this comment in the hope that it will be of some help to others out that who've been told by their doctors that they 'weren't aware of this 'first-bite' side-effect' and therefore haven't been pre-warned about these initially quite frightening events. 

Hang in there and keep fighting this rotten disease.

Jenny

 

 

 

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I get that jaw spasm with every treatment (had 4 so far).  It's whenever I take the first bite of something.  It lasts for a few seconds then goes away.  After about a week, the jaw sensation goes away but it is annoying in the beginnng. 

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