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Joined: Oct 2014
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Hi Everyone, just completed Week 1, and started Day 1 with cisplatin and IMRT radiotherapy. Pretty uneventful, the anti-nausea medication in the cisplatin IV kept things under control.

My big challenge is not from this cancer treatment so far, but from the major oral surgery I had 4 weeks ago which is still causing misery in my mouth! No problem with the extractions tooth socket healing, but there's a constant scraping and gouging of my tongue against some kind of bone which the dental surgeon cannot locate (I do have severe trismus, to be fair). Can'teat, cant talk, can't sneeze, sleep, hiccup, cough, swallow without scraping tongue pain!! Whenever I drink something, even very plain consomme, it kinda puckers up the sides of my mouth (some gland?) and it feels like swelling up inside, thereby causing more friction on any tongue movement. Never knew raw tongue pain can be so tough. This was unexpected and somewhat depressing!


QOL

_________________________________________________________
Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat.
Stage IVa
Trismus, neglected dental health
Age: 64, smoker aged 16-32 yr.
Diagnosed: 01/2014 (personally suspected well before that)
Self-treat (Cancell + mushrooms): 2/2014
Mexican clinic (Alternative): 6/2014
Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
Joined: Apr 2014
Posts: 236
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Sorry you are having all these problems from a dental surgery 4 weeks ago. Sounds like there is a problem somewhere . Seems like this should have healed by now. Since you have started your RAD & Chemo Treatments I would hate to see the side effects set in on top of all this. You really need to keep your food intake up. If you continue to go to long without eating maybe you should consider the feeding tube.

Make sure you have some good pain meds. available. If what you have is not strong enough ask Medical Oncologist for stronger.

You might have to seek another opinion from different Oral surgeon.

I hope you get well soon. This sounds very painful.

Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


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I agree with the she may need more/better pain meds from above. In about week 4-7 of radiation I had to use oral lidocaine rinse before every meal (and often times between meals also). By week 7 I had to use it both before and then during the meal to be able to get a whole meal down.

Be careful though, too much pain relief and she won't be able to feel the inside of her mouth at all. That could be really bad during meals as she won't know if she is chewing up her own tongue.

Good luck with all this, it's a tough road to travel.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Oct 2014
Posts: 14
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Posts: 14
Thank you for the pain medication advice. I'm a very light user of medication if at all possible so not quite at the lidacaine stage yet. Just finished Week 2 today, so thanks for the caution!


QOL

_________________________________________________________
Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat.
Stage IVa
Trismus, neglected dental health
Age: 64, smoker aged 16-32 yr.
Diagnosed: 01/2014 (personally suspected well before that)
Self-treat (Cancell + mushrooms): 2/2014
Mexican clinic (Alternative): 6/2014
Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
Joined: Oct 2014
Posts: 14
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Joined: Oct 2014
Posts: 14
The oral surgeon I believe is quite an impressive and knowledgeable doctor. The big challenge is the trismus (lock jaw) keeping my jaw opening so limited, so she (or anyone else) really can't get in to see much in there. Even the extractions were very, very difficult because of the limited mouth opening. Yes, you're analysis is correct, but I might just have to wait it out and hope for the best. I'm on feeding tube full time now, no oral food intake.


QOL

_________________________________________________________
Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat.
Stage IVa
Trismus, neglected dental health
Age: 64, smoker aged 16-32 yr.
Diagnosed: 01/2014 (personally suspected well before that)
Self-treat (Cancell + mushrooms): 2/2014
Mexican clinic (Alternative): 6/2014
Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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If you are able to still swallow sips of water, I urge you to do so several times every single day. Believe it or not, the swallowing muscles quickly deteriorate when not used and can actually forget how to function correctly. Swallowing tiny sips of water will keep them active enough so you dont have trouble after all this is finished.


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
Joined: Oct 2014
Posts: 14
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Posts: 14
Thank you ChristineB. Yes I can sip water although it's uncomfortable and eventually makes me choke and splutter. And I am constantly swallowing saliva, for now anyway, until later apparently it dries up.


QOL

_________________________________________________________
Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat.
Stage IVa
Trismus, neglected dental health
Age: 64, smoker aged 16-32 yr.
Diagnosed: 01/2014 (personally suspected well before that)
Self-treat (Cancell + mushrooms): 2/2014
Mexican clinic (Alternative): 6/2014
Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
Joined: Oct 2014
Posts: 14
QOL Offline OP
Member
OP Offline
Member

Joined: Oct 2014
Posts: 14
ChristineB, may I ask what your hyperbaric oxygen treatments were for and who recommended it?


QOL

_________________________________________________________
Oropharyngeal SCC, HPV-based, tonsil, tongue, and throat.
Stage IVa
Trismus, neglected dental health
Age: 64, smoker aged 16-32 yr.
Diagnosed: 01/2014 (personally suspected well before that)
Self-treat (Cancell + mushrooms): 2/2014
Mexican clinic (Alternative): 6/2014
Will begin conventional treatment soon, mostly IMRT radiotherapy, with a little chemotherapy (cisplatin) in sessions 1, 22, possibly 43.
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
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Joined: Oct 2013
Posts: 559
Likes: 1
I had just the beginnings of trismus when I was in treatment. I noticed my mouth would only open maybe 2/3 to 3/4 as much as it did before cancer. My doc said I had to exercise the jaw, ie open it as much as I could, to the point of pain. He also said take your fingers and try to stretch it open even more.

I did this every day while driving to and from radiation treatment. Today, one year later I think I have normal mouth opening and closing. My dentist concurs when she examines my teeth.

take care, you will get there
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
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Joined: Jun 2007
Posts: 10,507
Likes: 6
I did HBO several times due to not healing or needing dental extractions. I first did it in 2008 after surgery for my recurrence when I didnt heal. Since it not even one year from when I had finished rads my body just couldnt bounce back. I last did them 2 years ago for some bone fragments that were breaking thru my jaw. Its a love-hate relationship I have with HBO... I love how well the treatments work, but I cant stand being cooped up in the glass tank for 2 hours when I have a million other things that need my attention.


Dont stress about the dry mouth you keep healing about. You shouldnt experience dry mouth for weeks. That affects most of us about 3-5 weeks post rads. You will join us always carrying a water bottle everywhere you go.


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
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