Severe jaw pain/spasms on Oxy?

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
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.
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Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Jaw pain
    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
    geotina Member Posts: 2,111 Member
    Jaw pain
    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
    just4Brooks Member Posts: 980 Member
    My face went numb
    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
    coolvdub Member Posts: 408 Member

    My face went numb
    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

    Same as Brooks #3
    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
    polarprincess Member Posts: 202
    coolvdub said:

    Same as Brooks #3
    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

    hi
    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
    christinecarl Member Posts: 543 Member
    Yes I did
    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
    SandyL Member Posts: 218

    Yes I did
    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.

    Yes it's the Oxy...
    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
    robinvan Member Posts: 1,012
    Hi Kathryn
    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
  • P_I_T_A
    P_I_T_A Member Posts: 133
    Ole lock jaw
    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
  • maglets
    maglets Member Posts: 2,576 Member
    robinvan said:

    Hi Kathryn
    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

    sorry too
    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~
  • Julie 44
    Julie 44 Member Posts: 476 Member
    P_I_T_A said:

    Ole lock jaw
    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

    Me too
    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
    Annabelle41415 Member Posts: 6,742 Member
    Yes
    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
    Fight for my love Member Posts: 1,522 Member
    My hubby had jaw spasm for a
    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
    Buzzard Member Posts: 3,043 Member

    My hubby had jaw spasm for a
    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.

    Yep its Oxy.....
    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
  • bdee
    bdee Member Posts: 304
    Jaw pain
    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
    robinvan Member Posts: 1,012
    Oxy Neuropathy
    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
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Buzzard said:

    Yep its Oxy.....
    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

    LoL,Clift,you make me
    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.
  • lesvanb
    lesvanb Member Posts: 905
    Yes I had this
    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
    Buzzard Member Posts: 3,043 Member
    lesvanb said:

    Yes I had this
    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

    Could it be...........
    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
    Patteee Member Posts: 945
    I am not sure that
    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.