Previous Thread
Next Thread
Print Thread
#196696 07-04-2018 11:58 AM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
(apologies if wrong forum, couldn't decide if this fell under Long Term or Eating)

I did search, and can't find anything particularly recent that wasn't something I already commented on, so...

Got my new dentures yesterday! That's the good news. (Yes, finally!) I've never seen that staff so excited about anything ... I guess it's their vocational equivalent to welcoming a new baby into the world, and they've seen me through a heck of a lot over the years. I'd been feeling fairly brushed-off at my last couple visits, so their enthusiasm, and the detailed information they were giving me, and the fact that they want me in every single week for the next several weeks to ensure a good fit are REALLY encouraging. (This is NOT the same office that botched my surgeries. Thank the Lord.)

Of course, this is a holiday week, and I see them Monday but can't put in any calls for help sooner because they are taking the rest of the week off. And of course, in everyone's excitement yesterday, I overestimated how well they felt and didn't get them to trim enough off. (Going on the theory that it's easier to remove, and impossible to put back. Sigh. And at that point, it didn't seem to hurt, but... I should have known.)

Anyway, now I need some in-the-trenches stories for comparison and reassurance. The dentist had been preparing me for using Fixodent or the like because of lack of saliva (missing one gland) and all that, and given I grew up watching commercials for the stuff, I assumed it was normal. But the assistant I worked with yesterday seemed to be encouraging me not to use it unless I had to. So we only used it on the top, because it just wouldn't stay. Now I see WHY they had two different answers ... golly, when I took that thing out, it was like I'd tried to eat a glue stick! Not much stuck to the plate, but I had to get a washcloth to scrub my mouth! And scrub, and scrub ... and we'd only used a tiny bit! Is this normal? (Thankfully we'd stopped by a store on the way home to get some of that, and they'd also talked to me more about how to care for both the dentures and my mouth, so I'd bought some baby washcloths .... worth their weight in gold!)

And ... the lower one is really cutting into the bottom of my gum/lower lip line. They told me not to overdo it, just to try a certain amount of time each day and work up to it. I see why now. I'm wondering, though (with trepidation), if using the Fixodent stuff might hold it in place so it rubs less? I don't want to do Orajel or anything that numbs me to damage because that would be counter-productive ... this is not the time to push through. But I do want to be able to wear them for more than a half hour at a time between now and Monday, and not be terrified of them.

Also, not allowed to eat with them yet. Was advised not to even drink much with them, till I get better at it (which I can't afford to do because, dry mouth!) ... but I can see why they gave the advice! I cannot wait to get back to my speech and swallow therapist!

So ... who else is in the denture club, and does it sound like I'm getting reasonable advice and having the usual sort of beginner experience? Allowing for the fact that we all have uniquely wonky mouths here?

Oh, and whatever else, they at least look really good! My speech is lisping, but well, that'll improve ... as you can tell from the length of my posts, nothing stops me talking folks' ear off for very long ... laugh

Kristen


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 #196706 07-06-2018 09:52 AM
Joined: Mar 2018
Posts: 83
Likes: 1
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Mar 2018
Posts: 83
Likes: 1
So great, Kristen! Happy for you! Hope my dad can recover as well as you have!


Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
KristenS #196900 08-12-2018 03:35 PM
Joined: Jul 2016
Posts: 34
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2016
Posts: 34
Dear Kristen,
I wanted my dentures so bad so I could eat normal food like I did before my extractions, partial glossectomy, right neck dissection and rad treatments. There is a lower tori in my mouth as well that was supposed to be taken out with the extractions but it didn't get done. My radioncologist was in a big hurry to get me started on the rad treatments so the tori is causing me complications. I have had my upper and lower plate since April of this year. I can wear the upper plate with adhesive all day and it not hurt my gums after several adjustments and being patient. I feel the bottom plate is going to be a different story. I use adhesive on it too but is painful and rubs raw spots on my gums and is very uncomfortable. I have been waiting 24 hours between putting the bottoms in but I don't think that is long enough to heal. I have managed to eat 2 pieces of toast, 2 bananas, and a bowl of watermelon with the dentures in and it hurt my bottom gums whole time I was chewing. Relearning on how to use the tongue to push food between the dentures so I can chew has proven to be difficult too.
Thanks for the tip on baby wipes, I'll try them, I have been using paper towels to get the adhesive off my gums which that I agree that it sticks to my gums much better than to my dentures. Mouth wash seems to help with the adhesive as well as healing but I can't leave it in my mouth for long without burning my tongue.
I have had a soft food diet for about 2 1/2 years now and I don't see it changing anytime soon.
I also agree that Orajel is probably not a good idea though I have thought about it too.


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, End 11/17/17
8/23/19 Tongue reconstruction, left radical neck dissection
Murphy #196901 08-12-2018 05:48 PM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Let me clarify ... not baby wipes, but baby wash cloths ... very different! smile The roughness (but not too rough) really does grip the adhesive well. Thankfully.

And thank you so much for replying, this helps me a lot. I don't feel quite so alone. I am so depressed about this whole thing.


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 #196996 08-22-2018 10:32 AM
Joined: Aug 2018
Posts: 345
Likes: 8
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Aug 2018
Posts: 345
Likes: 8
Kristen, did you get the denture issues taken care of? I used to be a dental lab tech and faculty in orthodontics at a dental school.


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 #196998 08-22-2018 06:19 PM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Not yet ... it is SO hard to find the time to practice wearing them, since I am so behind on regular nutrition that I need to NOT be wearing them so I can eat when I'm able ... catch-22. They've helped me get them shaped better, so that's good ... but I'm not in a physically (or mentally) healthy place right now. My various docs are working on it.

Oh, and my old speech therapist went and left that company while I was out... I'm hoping that they might tell me where she went. Not that the other ladies aren't good too, I'm sure, but with all the other stress, it would do me a lot of good if I could get back with the person who already knows me and has the rapport. She's great at balancing the nagging and the sympathy.

It's always something ... but I suppose it could be worse.


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 #197000 08-22-2018 06:43 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Kristen, are you able to question any of your former speech therapists coworkers o find out where she went? You may find she could still see you just at a different practice. I know how difficult it is to have your team of specialists and losing one is hard on patients who have come to depend on their team. By asking, eventually you will find someone who knows your speech therapists next job location. At least its worth a shot. Ive done this myself. I followed my ENT when he left his former practice. My ENT had started the practice he left and after about 20 years he grew it into the top ENTs office in my area. Even though I really liked all the other ENTs their office staff at my ENTs original office, I still followed my ENT to his new practice and waited a few months for it to be all set up and open.

Good luck!! I hope you are able to find your speech therapist and continue seeing her.





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

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5