Question about mouth guards for IMRT and Radiation only Treatment

PJ47
PJ47 Member Posts: 376
in Head and Neck Cancer #1

Hello survivors,

 I have been quietly screwing around interviewing oncologists and fighting with Cigna and now have a plan of attack.  Going for TOMO/IMRT mask (just in time for Halloween) fitting and simulation tomorrow.  Read the posts about some kind of mouth guard that can protect the mouth from scatter radiation.  Asked my dentist and other dentists and they do not know about this and said, people must be mixing up the flouride trays and using them during radiation.  Can anyone shed some light on this?  I have teeth whitening trays which may work the same as flouride trays.

The other question I have is has anyone on this site with this EXACT  (or close to) scenario : SCC tongue base T1N1M0 p16+ status post TORS surgery and neck dissection clear margins by 2mm., no perineural invasion, no lymph vascular invasion, no bony/cartilage invasion   ever had radiation only?  

3 out of 5 oncologists I interviewed recommended chemo(2 Cisplatin 1 C225 Erbitux)  but the 2 that said I did not need chemo were convincing and quite sure based on my margins and path reports.  

All but 1 agree that a reduction (de-escalation) of IMRT radiation was in order (remember I have no tumors currently) due to the surgery and clear margins.  

Currenty, Dr. Bruce Haughey at Wash. U Barnes Jewish Hospital in St Louis is conducting clinical trials on this currently with IMRT 60GY for 30 fractions + cisplatin 40. The other arm of the trial is IMRT 60GY for  30 fractions, no chemo.   This is just an FYI if anyone cares to look for the trial It began Jan 2013 and is recruiting currently.  

Enjoyed the photos of those who are computer savvy.

PJ

 

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    I personally think

    it is a bit of an overreach to treat you with chemotherapy of any kind.  I understand the doseage reduction in your radiation.  There is a growing body of evidence that says in your situation (no residual tumor, HPV+) that excellent cure rates are achieved at lower than standard rads.  Go with your gut on this, but 7 out of 10 oncologists cant be wrong, can they?  Laughing

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #3
    Tomotherapy

    Hi PJ,

    I can't comment on the chemo regiment as it's unique to each patient (I had 6 weekly Cisplatin) but I can tell you I had Tomotherapy IMRT. The mask had a built in mouthpiece but it wasn't for protection as it was for helping to hold my jaw/head/neck in a precise position for the rads. Tomotherapy is more precise in it's delivery but it still tore me up unfortunately. On the positive side, I didn't lose my taste buds. Some things were a little "off" but at 6 months post treatment, I'm 100% back in the taste department. I still lack taste in other areas but that's not cancer related ;)

    I know many who have used and still use flouride trays. My dentist recommended a flouride rinse which I use twice daily (AM & PM). 

    Positive thoughts and prayers

    "T"

     

     

  • PJ47
    PJ47 Member Posts: 376
    #4
    longtermsurvivor said:

    I personally think

    it is a bit of an overreach to treat you with chemotherapy of any kind.  I understand the doseage reduction in your radiation.  There is a growing body of evidence that says in your situation (no residual tumor, HPV+) that excellent cure rates are achieved at lower than standard rads.  Go with your gut on this, but 7 out of 10 oncologists cant be wrong, can they?  Laughing

    I like your humor

    I am going with my gut on this one.  I just had to report on how many different view/treatments there are out there.  The overkill taking one to the brink of death and hoping they will come back that was prevalent in the 80's is still alive today me thinks.  The microbiologists out there are working on genes E6&E7 on mice and soon there will be clinical trials on real people for a targeted therapy for p16+ besides Erbitux, maybe even before I crump.  Holding out for 10 out of 10 concologists recommend....  

    PJ

  • PJ47
    PJ47 Member Posts: 376
    #5
    fishmanpa said:

    Tomotherapy

    Hi PJ,

    I can't comment on the chemo regiment as it's unique to each patient (I had 6 weekly Cisplatin) but I can tell you I had Tomotherapy IMRT. The mask had a built in mouthpiece but it wasn't for protection as it was for helping to hold my jaw/head/neck in a precise position for the rads. Tomotherapy is more precise in it's delivery but it still tore me up unfortunately. On the positive side, I didn't lose my taste buds. Some things were a little "off" but at 6 months post treatment, I'm 100% back in the taste department. I still lack taste in other areas but that's not cancer related ;)

    I know many who have used and still use flouride trays. My dentist recommended a flouride rinse which I use twice daily (AM & PM). 

    Positive thoughts and prayers

    "T"

     

     

    Thanks for positive thoughts

    I am sure it will be very challanging.  I am hoping that the lower dose helps spare some of the agony, but just in case I have joined the Hemlock Society (LOL) what I really meant to say is i am getting a PEG tube inserted for Halloween.  HMM could have some fun with the kiddos with this huh?

    Seriously, did you have a PEG tube?  I have read accounts of people having TOMO IMRT and going to work?  Don't know how they did this do you?  

    PJ

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #6
    Rads only

    I had mucoepidermoid carcinoma (the tumor was 4cm) and it took 2 major surgeries for me to get clear margins.  Once I did, and the tumor was removed, I only had rads....no chemo.

    I had a tube I had to hold in place in my mouth to keep my jaw in one specific place and very still. 

     

    I also ended up having to get a PEG and it was truly no big deal to have it put in or removed.  

     

    Wishing you the very best with your treatments!!

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #7
    PJ47 said:

    Thanks for positive thoughts

    I am sure it will be very challanging.  I am hoping that the lower dose helps spare some of the agony, but just in case I have joined the Hemlock Society (LOL) what I really meant to say is i am getting a PEG tube inserted for Halloween.  HMM could have some fun with the kiddos with this huh?

    Seriously, did you have a PEG tube?  I have read accounts of people having TOMO IMRT and going to work?  Don't know how they did this do you?  

    PJ

    Pretty Peggy O

    I made it through treatment without a PEG but I was in the OR getting one put in literally two hours after I rang the bell. I used it exclusively for 4 weeks. I still haven't destroyed my mask. That would be cool for Halloween but I don't know if I could bear putting it on!

    Everyone is different but there was no way I could have worked from about the two week mark on. 


    "T"

     

  • lornal
    lornal Member Posts: 428
    #8
    Mouth Guard

    They wanted me to have a mouth guard for my radiation treatment.  No way.  They said it was needed in case I had metal fillings.  Fortunately I didn't.  I am clastropobic - prob a 12 on a 10 point scale.  I needed 5 valium just to get the mask check in the CT scan.  They also wanted to strap my hands - I promised to be good and hold them tightly instead.

    PJ.are you in STL?  I went to Mo Bap

  • lornal
    lornal Member Posts: 428
    #9
    Mouth Guard

    They wanted me to have a mouth guard for my radiation treatment.  No way.  They said it was needed in case I had metal fillings.  Fortunately I didn't.  I am clastropobic - prob a 12 on a 10 point scale.  I needed 5 valium just to get the mask check in the CT scan.  They also wanted to strap my hands - I promised to be good and hold them tightly instead.

    PJ.are you in STL?  I went to Mo Bap

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    lornal said:

    Mouth Guard

    They wanted me to have a mouth guard for my radiation treatment.  No way.  They said it was needed in case I had metal fillings.  Fortunately I didn't.  I am clastropobic - prob a 12 on a 10 point scale.  I needed 5 valium just to get the mask check in the CT scan.  They also wanted to strap my hands - I promised to be good and hold them tightly instead.

    PJ.are you in STL?  I went to Mo Bap

    STL is well represented here

    I have been treated at St Johns, as have two others on  the board.  I think there is someone here also who was treated at Baptist.   Small world, yes?

  • PJ47
    PJ47 Member Posts: 376
    #11
    lornal said:

    Mouth Guard

    They wanted me to have a mouth guard for my radiation treatment.  No way.  They said it was needed in case I had metal fillings.  Fortunately I didn't.  I am clastropobic - prob a 12 on a 10 point scale.  I needed 5 valium just to get the mask check in the CT scan.  They also wanted to strap my hands - I promised to be good and hold them tightly instead.

    PJ.are you in STL?  I went to Mo Bap

    Not in STL

    Was going to go there for treatment  if local NC rad/onc would not agree with lower dose after speaking to my surgeon from Vanderbilt in Nashville (where I had surgery).  PJ

  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
    PJ47 said:

    Thanks for positive thoughts

    I am sure it will be very challanging.  I am hoping that the lower dose helps spare some of the agony, but just in case I have joined the Hemlock Society (LOL) what I really meant to say is i am getting a PEG tube inserted for Halloween.  HMM could have some fun with the kiddos with this huh?

    Seriously, did you have a PEG tube?  I have read accounts of people having TOMO IMRT and going to work?  Don't know how they did this do you?  

    PJ

    Strangely....

    Kiddos are facinated by the PEG tube....my grandaughter and my great nephew were constantly wanting to watch me feed myself...LOL....and all the "kiddo questions" that go with the spectacle.  

    p 

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #13
    Surgery then Radiation

    PJ,

    I had Surgery first then Radiation, 30 treatments. I used the flouride trays at each treatment as it was recommended. I also had a Peg Tube, had no choice as my cancer was Base of Tongue. I had part of my tongue removed, so no eating for some time.

    My Best to You and Everyone Here

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #14
    about to start

    PJ,

    If you are going to wear your mask for Halloween be sure to have them cut eye holes in it (not everyone does).

    I inserted 4 dental rolls just before rads, every time.  I am still not sure what they did?  I know it wasn’t to stop radiation.  I guess the mask kept me steady on the outside and the dental rolls kept me steady on the inside.

    I was stage IVa,  scc, bot, hpv+, 1 lymph node (surgery, rads & Erbitux). That is my badge of honor.  I went to one ENT, one rad onc and one chemo onc and swung for the fences. So far so good.

    It sounds like your planning stage is almost over and it is time to start the show.  You will make it through quickly and then start planning your future.

    Good luck,

    Matt

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