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#197956 03-09-2019 09:39 AM
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ConnieT Offline OP
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husband made a huge breakfast of eggs, toast, etc. he came out and said he can't eat. he's seeing the dentist on Monday. He said he's in pain where he had the extraction in July. Even with my decades of dentistry (i know orthodontics), I wonder if it's effects from radiation or what? He has been eating full force for awhile and got his feeding tube removed on Thursday.

The thought in my head: here we go. side effects are starting to show up. He did nothing to educate himself what to expect from these treatments so we will see how this goes.

Last edited by ConnieT; 03-09-2019 09:40 AM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #197958 03-09-2019 04:17 PM
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It could be a side effect he couldn't predict or prevent. I had the weirdest nerve pain in my jaw / teeth. I was thinking trigeminal neuralgia (and still do); one of my consultants (dentist, maybe) thought it might be referred pain from a bad tooth. Nobody could figure it out, and none of us could make it feel better (which was all I really cared about at that point, not even my neurologists). It had to have been a side effect of the treatments, whatever it was. Oddly, once I lost all my teeth due to the radiation and the subsequent removal surgery, that particular pain went away. So either the referred pain was correct and we removed the problem tooth along with the rest ... or it was a TMJ thing, and I can't clench my jaws anymore because there's nothing to clench at night, LOL, Or it is some kind of neuralgia, but we still managed to remove some source. Anyway, yes, again a lot about me ... but using it as an example. It was NOT something that could have been predicted or avoided. Unless it really was a tooth gone bad and better hygiene might have helped, which I doubt in my case since I lost them all and probably isn't in your husband's case since it hasn't been that long (but is definitely worth checking!).

If it is a nerve thing, there are meds that can help with that. I react badly to most of them, which is why my neurologists weren't as much help as they might have been. (They don't handle patients well who don't fit typical molds.) Most folks do find relief if that's what the problem is. Worth looking into.

But dentist first, since it seems tied to the specific tooth. If they're experienced with cancer treatments and side effects they should know where to point you next. Does he have and use the fluoride trays? I think you can still use them after treatment (no, I did not, alas), and that would probably help preserve some of the other teeth from succumbing to damage. Nerve/tooth pain can be a great wake-up call even to the stubborn!

*Not a medical expert, just a well-practiced patient, LOL. My official caveat.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #197962 03-10-2019 07:39 AM
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ConnieT Offline OP
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thank you for the information Kristen...always a wealth of experience and information you never wanted to have under your belt!

I guess we will find out tomorrow what the deal is. You can guess if he did the fluoride trays! He was the most uncooperative patient ever if you ask me so he did not do the trays. The rules don't apply to him. His dentist lives down the road from us, young guy. He actually brought the trays to our house. At least he went to the dental office i felt the best about.

I find I need to stay informed so I know what to be alarmed about and what to expect. He has made zero effort to learn anything so everything is a BIG deal to him as it has only happened to him. Par for the course.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #197964 03-10-2019 08:46 AM
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Good luck tomorrow!!! Hopefully your husband has something unrelated to OC or his treatments/recovery. Please let us know how he makes out.


PS... @Kristen... Several members over the years have been told by their dental professional/specialist/ prostheodontist/ dental oncologist to continue using the fluoride trays for life. After having rads for OC, patients/survivors MUST pay close attention to their dental care. This includes brushing and flossing after every meal and snack along with using the dental trays. Im sorry but I just cant remember all the details of the dental trays as patients/survivors are years out from finishing their rads. It just seems like its something that can be cut back on after a few years but only after consulting with your dental professional. If someone is say 3 years post rads, is still using the trays I would think they should continue to do whatever has been working for them. My teeth werent great going into OC and they really took the brunt of rads. At 2 years post rads, my teeth were so loose and crooked I was scared they would just fall out while I was trying to eat or talk. I thought Id get dentures but instead I ended up getting OC again and there went my plan of having a perfect smile with beautiful white little teeth. No complaints!!!! Im still thankful for every single day no matter what daily inconveniences I live with.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #197965 03-10-2019 10:54 AM
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Christine, you are so right. I learned that one the hard way. However, I am now a good example to use for others here, so at least I can be an object lesson. There's that! Somebody might as well gain from it. laugh I suspect it might have happened anyway ... but my mistakes hastened the process. And the pain was unrelated, I still think. But it's another reason I definitely advocate here ... Do What Christine Says! (Hey, we could sell t-shirts with that ... it'd be a great OCF fundraiser, LOL. I'd wear one!)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #197968 03-11-2019 06:59 PM
Joined: Aug 2018
Posts: 345
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ConnieT Offline OP
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so the dentist does not know. nothing in the xray. he said maybe there was a piece of root left in there but there is no sign of it. i've heard dentists say excuses like this when they don't know...I spent 17 yrs (part of it as faculty) at a dental school. so no resolution on that but he said the pain is easing.

next week, he was to do the esphogus stretching thing so he can swallow better.

found out yesterday from a family member that he is telling people that he had no support during this cancer. let's say that family member hit the roof with truths. wow. maybe he needs to find someone to drive him to that stretching since he hasn't had any support during this cancer.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #197969 03-12-2019 12:03 PM
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Posts: 71
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Hi Connie! Well here's my confession, I have had my trays since before my radiation and......have only used them once. And I LOVE MY TEETH and don't want to lose them. Honestly, it's mental. I'm still mad about all these changes to my life that I didn't ask for and it's very possible that's where he's at as well. It's a struggle making myself do the neck stretches and massage even though I need to. It's stupid but it's I think a long hard road to acceptance of the cards we've been dealt.

I wish I had the words to help you help him. I don't. It all sucks! Good luck and maybe with him now having pain he will be more motivated to start following dr. orders.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
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Posts: 345
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ConnieT Offline OP
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when a person believes the rules don't apply to them, it's unlikely they will follow them!

he's never bothered to read or learn anything about all this stuff so when I tell him other's experiences, he acts like I am crazy. oh well. some must learn the hard way. He doesn't listen to the doctors either. i guess we will see how this goes with his dental health. I"m not an advocate of fluoride really but I would at least do some investigating and reading about it if i thought it might save my teeth.

I remind him once in awhile how fortunate he is on so many levels and has not had to deal with loss of taste, actually little pain during radiation (more of it afterward though), back to work within a 3 months, etc. He gets frustrated and thinks he should be back to square one but that's because he has no idea what is normal or abnormal.

I hope you get to keep your teeth VirgoMom...dentistry was my career and I just hate to see anyone lose any teeth.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
KristenS #200458 10-04-2020 12:28 PM
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Posts: 5
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Did you have all your teeth removed before or after radiation treatments?


MrsDranchak
mrsdranchak #200460 10-05-2020 02:25 AM
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"OCF across the pond"
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This post is a year old, so you might not get a response.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients

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