Jaw is closing more and more

stevenpepe
stevenpepe Member Posts: 234
in Head and Neck Cancer #1

Hey all,

Hope all is well with everyone here. Many of you know my story. To keep it short, I'm finding my jaw is closing more and more every day. I've been to therapy for stretching exercises and I admit, I have not been consistent with it. For those with radiation to the neck area, are you experiencing this? I know radiated tissue never gets better but at this rate, I'll barely be able to brush my teeth. Cancer sucks.

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Comments

  • DanceSkater
    DanceSkater Member Posts: 62
    edited August 2017 #2
    Trismus

    This is a long article but informative.

    http://oralcancerfoundation.org/complications/trismus/

    I also have problems with trismus.  Had 35 radiation treatments April/May/June 2016 and a radical left neck dissection June 2017. 

  • Mavish
    Mavish Member Posts: 84 Member
    #3
    I have been off the treatment

    I have been off the treatment since july 2016. I am experiencing what they called Trismus. Only treatment is excercises. I came from 15 mm opening to 25 mm in about a year. Progress is very slow. Memorial Sloan Ketteing Cancer Cente have online resoursces. I wasn't able to do everyting as advised but I did something every day. I also used a dviced called therabite. I think it is help ing too. U also checked everything with my healrcare team if it is suitable to use in my specific condition. My dentist advised me that I should doi excercises rest of my life 3 times a day. (i can only do once a day) Don't be discourage improvemwnt is very slow that you can't see any change from day to day. Even maintainin current opwning is a succes. They also advise me to be gentle doiring excercises and not to hurt my self by overdoing streching beyond comfortable limits.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited August 2017 #4
    DanceSkater said:

    Trismus

    This is a long article but informative.

    http://oralcancerfoundation.org/complications/trismus/

    I also have problems with trismus.  Had 35 radiation treatments April/May/June 2016 and a radical left neck dissection June 2017. 

    Trismus

    Thanks for the link. Very informative. My therapist recommended Therabite a few months ago but I declined due to the cost and no coverage from my insurance. I decided to just buy it and give it a try. I've been using the tongue depressors but don't want to risk further atrophy.

  • DanceSkater
    DanceSkater Member Posts: 62
    #5
    stevenpepe said:

    Trismus

    Thanks for the link. Very informative. My therapist recommended Therabite a few months ago but I declined due to the cost and no coverage from my insurance. I decided to just buy it and give it a try. I've been using the tongue depressors but don't want to risk further atrophy.

    Brushing your teeth

    You might consider using a children's toothbrush for a while.  Since it's smaller, there's a possibility you'll be less uncomfortable brushing your teeth and you'll brush longer and do a better job of it.  It's also easier to get the smaller brush between your upper and lower back teeth. 

  • stevenpepe
    stevenpepe Member Posts: 234
    edited August 2017 #6
    DanceSkater said:

    Brushing your teeth

    You might consider using a children's toothbrush for a while.  Since it's smaller, there's a possibility you'll be less uncomfortable brushing your teeth and you'll brush longer and do a better job of it.  It's also easier to get the smaller brush between your upper and lower back teeth. 

    Hi

    I use an Oral-B electric toothbrush. Standard toothbrushes are too big now.

  • rahlf43
    rahlf43 Member Posts: 3
    edited August 2017 #7
    Trismus

    While I dont have actual trismus, I do have diminished jaw opening that is worrisome because now that i am 5.5 years since chemoradiation at age 68 (63 Gy and Erbitux,two induction cycles of chemo). I am experiencing more and more fibrosis of facial, neck and shoulder musculature and it is affecting my TMJ. 

    Early on I read  of some trials of using Trental ( pentoxifylline) and vitamin E as an agent to prevent, slow or intervene with radiation fibrosis. I dont have any way of knowing if it is working but my fibrosis is limited and progressing very slowly and I havent missed a dose since starting about a 3 months after completing radiation.

    There have been no side effects .

    I put this out there because there is some literature out there that suggests that this combination can help with radiation fibrosis. Do your own Googling and definitely discus this with your oncologist. 

    If it hasnt helped at least it hasnt hurt. Not a scientific point of view necessarily because there no control to compare my resullts to but the relaitve low cost and lack of side effects make this a reasonable alternative.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    #8
    I experienced trismus after

    I experienced trismus after treatment. It slowly improved with stretching during the first year. Bill

  • rsp
    rsp Member Posts: 103 Member
    edited September 2017 #9
    rahlf43 said:

    Trismus

    While I dont have actual trismus, I do have diminished jaw opening that is worrisome because now that i am 5.5 years since chemoradiation at age 68 (63 Gy and Erbitux,two induction cycles of chemo). I am experiencing more and more fibrosis of facial, neck and shoulder musculature and it is affecting my TMJ. 

    Early on I read  of some trials of using Trental ( pentoxifylline) and vitamin E as an agent to prevent, slow or intervene with radiation fibrosis. I dont have any way of knowing if it is working but my fibrosis is limited and progressing very slowly and I havent missed a dose since starting about a 3 months after completing radiation.

    There have been no side effects .

    I put this out there because there is some literature out there that suggests that this combination can help with radiation fibrosis. Do your own Googling and definitely discus this with your oncologist. 

    If it hasnt helped at least it hasnt hurt. Not a scientific point of view necessarily because there no control to compare my resullts to but the relaitve low cost and lack of side effects make this a reasonable alternative.

    Trental

    rahlf43-

    My husband is also on Trental and vitamin E.  Are you by chance being treated at Johns Hopkins?  Just curious if there are other places that are also suggesting this treatment.  My husband did have side effects from taking the Trental, so currently he is taking a break from it, but is hoping to start again soon.

    Best of luck to you.

  • bsleatherman
    bsleatherman Member Posts: 1
    edited September 2017 #10
    stevenpepe said:

    Trismus

    Thanks for the link. Very informative. My therapist recommended Therabite a few months ago but I declined due to the cost and no coverage from my insurance. I decided to just buy it and give it a try. I've been using the tongue depressors but don't want to risk further atrophy.

    clever tool for jaw stretching

    my therapist gave me a simple wooden clothes pin clothes..  i used it to help me open my jaw/mouth by putting the small end on my front teeth and then squeezing the big end to "pry" my mouth open. after i got uesd to it I would do this many times a day for a few minutes. the other "exercise" she told me to do that really helped was the "a, e, i, o, u" vowel exercises we used to do in elementary school. she had me exgagerate my mouth movements for this exercise and I would do this many times a day, mostly while driving places, doing things. these two exercises really helped "limber" my jaw / mouth up. good luck.

  • stevenpepe
    stevenpepe Member Posts: 234
    #11
    Therabite

    I bit the bullet and bought the Therabite. Amazon had it for $450. Not covered but it works much better than the tongue compressors.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #12
    open wide

    Hi Steven,

    100% agreement, cancer sucks!

    Now that you will be using the Therabite, I hope you have good results.  It sounds like you were given some good advice on here.  The right people are often reading the threads and are willing to offer their help.

    I never had this problem, but did go through speech therapy, which helped a lot.

    All the new things we need to do for a healthier life, swallowing, dry mouth, speech, teeth, neck. etc. as a result of cancer treatment does truly take some getting used to.  I hope you have good luck with your new Therabite habit.

    Matt

  • stevenpepe
    stevenpepe Member Posts: 234
    #13
    CivilMatt said:

    open wide

    Hi Steven,

    100% agreement, cancer sucks!

    Now that you will be using the Therabite, I hope you have good results.  It sounds like you were given some good advice on here.  The right people are often reading the threads and are willing to offer their help.

    I never had this problem, but did go through speech therapy, which helped a lot.

    All the new things we need to do for a healthier life, swallowing, dry mouth, speech, teeth, neck. etc. as a result of cancer treatment does truly take some getting used to.  I hope you have good luck with your new Therabite habit.

    Matt

    Thanks Matt

    I'm already seeing a difference. I was beginning to see a degrading ability to open my mouth so I'm happy I made the purchase. I'm already seeing improvement in just one day. I'll post my results in due time. Hope all is well with you.

  • stevenpepe
    stevenpepe Member Posts: 234
    #14
    bebo12249 said:

    I experienced trismus after

    I experienced trismus after treatment. It slowly improved with stretching during the first year. Bill

    Thanks for the uplifting results

    I'm hopeful my new toy will bring some normalcy to this new life of mine.

  • PACE
    PACE Member Posts: 22
    #15
    Therabite

    I'm so happy you made the (costly!) decision to invest in a Therabite unit. All the research I have ever read indicates that it is extremely helpful for the type of jaw issue you are experiencing. I am also happy to hear that it made a difference in even just one use. I know you're going to have great success. Your willingness to try different approaches speaks volumes about your tenacity. Good for you. Please doncheck back and let us know how you're doing. And, yes, cancer does indeed suck!!

  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    edited September 2017 #16
    stevenpepe said:

    Thanks Matt

    I'm already seeing a difference. I was beginning to see a degrading ability to open my mouth so I'm happy I made the purchase. I'm already seeing improvement in just one day. I'll post my results in due time. Hope all is well with you.

    Trismus

    Steven, I can't thank you enough for all the help you provided us while my husband was going thru treatment last year.  He too suffered from severe trismus and ended up having surgery to relieve it. It's not perfect but at least he can open his mouth past 5mm and actually eat again.  Try a water pik for oral hygiene. It's amazing what they can get out. 

    I wish I'd seen this earlier. We have an extra Therabite I found at an estate sale.  It does need new pads but those can be ordered from Amazon. You're welcome to it if you need it. 

    Tammy

  • JennaM
    JennaM Member Posts: 9 Member
    edited September 2017 #17
    Very dry mouth

    I am just a half way through 35 sessions of radiation and have problem with a very dry mouth.  In the morning I cannot separate my tong from the palet.  Have to sip a bit of water to do that. Mind you my mouth was always on a dry side, but this is beyond imaginable. I drink a lot of water and other liquids, but not much help.  And the taste is horribly affected.  If I could not eat I would be very happy, but apparently I have to eat more to prevent weight loss.  Lost completly taste so eating is a chore. Will this ever imporve??? All suggesions are very welcomed.  

  • soonermom
    soonermom Member Posts: 155
    #18
    JennaM said:

    Very dry mouth

    I am just a half way through 35 sessions of radiation and have problem with a very dry mouth.  In the morning I cannot separate my tong from the palet.  Have to sip a bit of water to do that. Mind you my mouth was always on a dry side, but this is beyond imaginable. I drink a lot of water and other liquids, but not much help.  And the taste is horribly affected.  If I could not eat I would be very happy, but apparently I have to eat more to prevent weight loss.  Lost completly taste so eating is a chore. Will this ever imporve??? All suggesions are very welcomed.  

    Eating

    My husband has had the same issues with eating and more.  It seems the journey of HNC patients tends to be both somewhat unique and yet have common characteristics.  All I can tell you is that what you are describing seems typical.  No one can tell you now for sure how your journey will go.  What I have noticed is that slowly, more slowly than you will be happy about, some things do improve for sure.  In some ways you have to look at the big picture in the aftermath of treatment.  My husband is working and traveling and doing things he enjoys.  Is everything like it was before cancer? Nope, but he is happy and productive and very glad to be alive.  Continuing to get adequate nutrition and hydration during the rest of your treatment and recovery is critical to a good outcome.  Work with your treatment team to do whatever is necessary to get through the end of treatment in the best shape possible.  On every visit they just kept giving us something new to try.  Hang in there and yes, many things that are difficult for you now will improve.  Stay strong.  It is a hard road for sure but you can do it.

  • alee1700
    alee1700 Member Posts: 1
    #19
    rsp said:

    Trental

    rahlf43-

    My husband is also on Trental and vitamin E.  Are you by chance being treated at Johns Hopkins?  Just curious if there are other places that are also suggesting this treatment.  My husband did have side effects from taking the Trental, so currently he is taking a break from it, but is hoping to start again soon.

    Best of luck to you.

    Trental

    Hello rsp, 

    How are you. I saw your message regarding your husband's usage of Trental and Vitamin E in treating fibrosis.

    My wife has been suffering from debilitating symptoms resulting from LT radiation toxicity (treatment of nasopharyngeal cancer) resulting in spasms, palpitations, and chronoc pain.  I live close to NYC and have reached out to many oncologists about using Trental/VitE or Avastin, but no one seems to have heard of such an approach.  I was hoping if you could be so kind as to share any doctor's name at Johns Hopkins who you may know that has prescribed trental for fibrosis before. My sincerest gratitude in advance. 

     

    Warmest regards,

    Andrew

     

  • Nextom
    Nextom Member Posts: 6
    #20
    Starting on Therabite, too

    Hi all,

    I‘m having the same problem with Trismus, due to radiation of the jaw. Until today, I didn‘t know about the Therabite device, but I contacted them right after reading about it. I‘m so glad to have found this forum. Much better than all the other cancer-forums that I visited. This one actually gives real advice. Thank you all so much.

    Thomas

  • lorijeannj
    lorijeannj Member Posts: 56 Member
    edited November 2017 #21
    Nextom said:

    Starting on Therabite, too

    Hi all,

    I‘m having the same problem with Trismus, due to radiation of the jaw. Until today, I didn‘t know about the Therabite device, but I contacted them right after reading about it. I‘m so glad to have found this forum. Much better than all the other cancer-forums that I visited. This one actually gives real advice. Thank you all so much.

    Thomas

    In these forums, we give our

    In these forums, we give our experience, not advice.  Take what you want and throw the rest away :)

    Glad you found some useful information.  Hope that jaw recovers.  My husband got tired of hearing the doctor say "chew gum!".  He kept forgetting my husband has no molars, lol

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