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Jaw Pain

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Just wondering if anyone else has had this strange side effect of chemo....I have been having jaw pain, almost like I can't eat at first...major jaw watering like I ate something really sour.

 

carie

allmost60's picture
allmost60
Posts: 3173
Joined: Jul 2010

Hi Carie,

 I don't remember having jaw pain, but I did have achey joints and muscle pain throughout chemo treatments. Shoulders, knees, ankles, elbows ...I was a achey hot mess! I did clinch my jaws alot during the pred week, but would catch myself and try to relax. Prednisone can cause alot of weird stuff...no joke! I did plenty of research on prednisone and read many stories from people taking it, and NONE of it was "happy" talk. Smile How strong is your pred dose? I had to take 60mg a day for 5 days. He wanted me to take 100mg, but I told him no way...he'd have to shoot me first! My PCP stepped in and explained to him how bad I re-act with the pred, so he lowered my dose..(thank gosh)! Take care sweetie and keep your eye on the end prize...REMISSION!  Love...Sue

(FNHL-2-3A-6/10-age62)

 

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Sue,

I appreciate the heads up on the prednisone "come down", nobody filled me in on that one as of yet....Alll this stuff seems like trial and error, all I can do is laugh through it. My dose is 100mg for 5 days, I really thought  was going to swell up like crazy and haven't yetLaughing. A girl I work with is on prednisone for her Crohns Disease and her face doubled in size overnight.. I think I might be having a little lower back pain also, but that could be from sleeping wrong or working 10 hours on my feet. Maybe I need to research this little side effect more indepth. I read somewhere that sucking on hard candies to keep your saliva glands going would help, I just don't want to get to a point where I can't eat....and If you knew me, you would know that would take alot to get me to walk away from food.Tongue Out. I have been so blessed thus far to have no real side effects and I feel like I have a lil more pep in my step. I keep telling myself that the jaw/neck pain is the chemo killing those cancer cells that have my lymph nodes filled up...Dirty Rascals.

I can honestly say that I have been a little cautious about going to sleep and waking up, I have this feeling of "oh crap anytime now it is going to hit me." I am EXTREMELY thankful to wake up and feel the same as I did the day before. I don't want to just sit around and wait for it to hit...I worked 10 hours today and then took my 8 year old to Tae Kwon Do class, I am trying to make his life seem as normal as I can. Poor lil fella doesn't even know his mom is sick. Everything is scheduled while he is in school, I drop him off and then go to my surgeries or appointments.

AS far as a PCP, I don't currently have one. My previous one is the one who told me since september that I didn't have cancer and he wouldn't refer to a specialist to get my swollen lymph node on my neck checked out...such is life....Kinda crazy that I am going to school to be a Physician's Assistant and had to drop out for medical reasons, hopefully the fall will bring remission and the start of a new semester of school for lil wonderwoman here.

Thanks for checking up on me,

XXXOOO Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1182
Joined: May 2012

Carie,

Expect things to feel a little odd for the next few months. I agree with Sue that the rituxan may account for the joint pain (in your jaw), since it very commonly causes bone and muscle pain (I felt like I had the flu from muscle pain for nearly six months during my treatment).  Ironically, rituxan was first developed to treat inflammatory (rheumatoid) arthritis, and is still popular for that.

Change in taste (dysgeusia) is a very common chemo side effect as well, and your Vincristine will do that.  Often described as "metal mouth," because the most common tasste is supposed to be metallic.  I never had a metallic taste: My mouth felt like it was full of salt all the time. Otherwise, I did not taste anything.  "Sour" is one of the four main taste sensations, so your taste is one of the possible reactions.   There are some home remedies that people try to reduce symptoms, but none worked for me.   The good news:  Like hair loss,  change in taste almost always returns to normal after chemo ends, so normal taste sensation is in your future.

My chemo combination did not contain prednisone, so I cannot comment on it at all, other than to say that everything I have ever read about it here was unpleasant !

Keep fighting !

max

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Max,

 you are not kidding about strange being the new normal.....man oh man, my body is like it is possessed sometimes. My memory seems to be suffering a little bit, I am blaming it on old ageWink

I must say you are like an encyclopedia of lymphoma knowledge....sometimes I wonder if all of us on this site got together and did some research that we might find a cure quicker than the "experts". They must rely on us, since they don't personally experience it. What do you think would happen if we all made up some strange side effect and reported it? something real obscure like...hmmm..."when I burp it sounds like a bird chirping"...boy that would have em stumped for years.

Seriously though, without you guys I would be lost and anxious about the next step. It is nice to chat with people who know where you are coming from, going to and have been.

I always appreciate your insight...keep it coming

XXXOOO

Carie

P.s. you don't know what you're missing out on with that prednisoneWink

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1182
Joined: May 2012

Carie,

I tell people I learned medical information by having had everything !

max

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1182
Joined: May 2012

Carie,

I have not heard from the girl-fighter for a little while. How are you ?

max

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Ditto Max's calling!!! Hope you're doing ok...and when you get a chance drop by and let us know ok...take care sweetie

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

i realize you might be on a secret mission saving the world, but would love to hear from you!

Hugs - Jim

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Hi Carie.  I never experienced jaw pain but did have worse than flu-like aches from neulasta in my lower back that radiated to my chest.  I'm amazed/glad you are able to work and keep it "rollin'".  Just remember to listen to your body and rest when you need to - don't feel like you're not "Wonder Woman" if you find you're able to do less later, okay?  Hugs

click on link:

More Hugs :)

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Jim,

I have no idea how you were able to find that video of meWink...lol...but that is how I feel sometimes...Well she is alot taller than me, I top out at 5ft 3in. I am telling myself that the jaw pain is from the chemo attacking the tumors in my neck, it works for me. I am not ready to sit and wait for the truck to hit just yet, so until then I will keep up with my antics.

 

xxxooo

 

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

I think prednisone makes us taller or is it the chemo?  LOL. Surprised.

onlytoday's picture
onlytoday
Posts: 595
Joined: Jun 2010

Hi Carie,

 

I had jaw pain when I had my last chemo.  My doc didn't seem to think it was related to the chemo but it went away two weeks after the infusions and then the following five months the same thing would happen, so I am convinced that it was the drugs.  Never really found a way to make it feel better - just waiting it out.  I thought that I was grinding my teeth and even went to the expense of getting a mouth guard that I really don't need!

I love your spirit- keep fighting this mess!!  You CAN kick your cancer to the curb!!

 

Cool  Donna

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Donna,

Thank you, I was starting to think that I was crazy....well, I am...but in regards to the jaw pain. I know that this is from the drugs, just not sure which one it is. Of course, it doesn't really matter which one as I SEEM to be told that I need them all..lol...I wish we could have a menu and order which drugs we wanted, the outcome might not be quite as effective but atleast I would feel proactiveWink. Maybe I clinch my jaw alot cuz I know they are coming to poke me again, kinda ironic how a little needle poke hurts worse than anything else I have endured thus far. Trying to convince the nurses that I am running out of blood has proven to be a waste of time, they assure me that I have lots. I suppose I could stay "hopped up" on all the pain killers, but quite frankly I wanna remember the dumb stuff I do on a daily basis. It's no fun if you can't remember...just like drinking!!! Speaking of that, man am I lucky I didn't decide to spiral into a massive depression and become an alcoholic when diagnosed, since I am not allowed to drink....geesh can't we have any fun??!!! I feel like you should just wear the mouth guard around on days when you don't feel like talking to stupid people, maybe they will think you are unable to talk for medical reasonsLaughing

p.s. my spirit loves u too

XXXOOO

Carie

newgirldownsouth's picture
newgirldownsouth
Posts: 9
Joined: Apr 2013

I had the exact same pain in my jaw, like eating sour candy, every time I started eating!

it got better several days aft chemo, but I still make a face before taking a bite!

good luck!

N

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

I suppose that explains the "good mojo" pic - just kidding.  Hugs

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

LOL...I knew I couldn't possibly be the only one making that face...Perhaps I may be the only one doing the sour shuffle tough, its a crazy little dance I do that I AM SURE makes the pain go away...I have convinced myself that the dance helps. It was only for a couple of days after my treatment, but I am sure that sneaky lil sour sucker will be back next week after my next poisoning!!

 

fullyloved
Posts: 38
Joined: Oct 2012

Good. I finally find someone else who is working during her chemo. I worked through 3/4 of mine, full time for half. The only reason I didn't work through all of it was that I was so sick before I received chemo that I had to build up my strength before going back to work. The side effects don't have to hit you. I was told all kinds of horror stories and experienced ZERO of them. I hardly know I was even getting chemo or Rituxan or prednisone. I had very few side effects, and I hope it continues the exact same way for you. Throw all those horror stories out the door and live your life at 90 mph! Remember, it's not nearly the same way for everyone! Cool 

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

90 mph seems a  bit fast for me without training wheels, but at your recommendation I will give it a go!!Laughing Working through chemo is kinda a two-fold thing, I have to be a hero to my son and the youngsters that I work with @ the same time I am unable to not work...Perplexing issue of if I should just lay around and act miserable or keep working and act miserable...lol...either way I can get sympathy, but only one way pays the bills... I am actually lucky and blessed to be going through all this with such "ease" thus far. My nurses tell me I am doing great, but I think they get paid to be positive and uplifting. I am surrounded by lots of love and that seems to make things easier to deal with. I am praying that I can pay the right person enough $$$ to keep the side effects at bay also.

If you would slow down to like 78 mph, I might be able to catch up....but KEEP ON KEEPING ON!!!!

 

 

GKH
Posts: 320
Joined: Jul 2012

Carie - you know what I don't like about you? You make me feel like such a wuss! I admire your strength and attitude! You are an inspiration to me and I am sure to others! Keep the messages coming. Reading what you write helps me cope. Thanks

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Dang.....I have heard of secret admirers, but a secret hater....hmmm. that is new to me, but really everything is new to me in my life right now...lol..I really am honestly just a real easy going person that decided that once I was diagnosed with the "C" word that my life must go on and it must be the best everyday. Gosh, If i was allowed to drink, I promise I would be wayyyy more entertaining. I am a wuss too, I have to take ativan before my treatments and use lidocaine to numb up the "area" (port).  I figure as long as I can sit through my 7 hour chemo "stoned" from ativan, that it wouldn't be quite so bad...Wink I told the nurses I just got cancer to get the good drugs!!I have bad moments that I try not to dwell on too much, I guess being a single mother has toughened me up. It warms my cold heart to know that I can help someone cope with such a crappy hand we all got dealt, I just have my poker face on is all Can't see my eyes through my cool shades I got here ====>Cool can you??!! To be honest with you, being on this discussion board helps me cope, I am surrounded by others who have been where I am going or going to the same place, its like Grand Lymphoma Central. Friends and Family have been wonderful,but it isn't quite the same as being around people that have been effected personally the same way I have. I was so pi$$ed off when they told me I had cancer, I was like "wait a cotton pickin minute I don't feel sick are u sure?" I kept telling them that I just needed a week off work and a nice long uninterrupted nap, but they just weren'y buyin what I was sellin. I shall work on sending you a Jedi-Mind Trip, but in case it doesn't arrive quickly enough please request laughing gas.

Feel free to join me in giving lymphoma the middle finger...I soooo wish there was a smiley for that one...lol

XXXOOO

Carie

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Carie, thank you for making me laugh.  Easy to find on the web is a logo/pic titled "Cancer can kiss my a$$" - I used it in some cards I sent out to friends over the holidays after I finished chemo.   

Ritta1978
Posts: 1
Joined: Mar 2013

Carrie, Glad to now someone else has the jaw pain like eating something sour.  It doesn't matter what I put in my mouth, the first bite is like eating something sour and I do a little dance sometimes too.I am on Rituxan, Velcade and Revlimid.  Not sure which one is causing it.  The nurse seems to blame Revlimid for all of my strange side effects.

girliefighter's picture
girliefighter
Posts: 217
Joined: Mar 2013

Hey There Ritta1978,

Just wanted to let you know that I feel your sour pain...I also am on rituxan...I only have this problem a few days after chemo an it might last a week..Feels like I am also getting an earache or sore throat with it. I was thinking that it was the prednisone, because I am only on that for 5 days after each treatment..but truthfully who knows with these crazy drugs, I just hope it is because it is working!!Smile

Let me know how things are going for you and if you get to the bottom of these crazy side effects

XXXOOO

Carie

NANCYL1
Posts: 256
Joined: Jun 2012

are you clenching your jaw?   years ago, having nothing to do with cancer, I was clenching.  It can make your jaw hurt, for sure.  check with dentist, perhaps.  probably a sign of tension????  I have a windows 8 H.P and can hardly type.

 

nancy

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