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#193508 12-05-2016 10:09 AM
Joined: Jul 2016
Posts: 85
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Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
Had to cancel dental appt on Thursday as my brother who is a quad was having chest pains and shortness of breath at 2 am on Tuesday. We went to the ER by ambulance. He did have a fib and out of the hospital now with a monitor for 30 days. I always stay right with him 24/7 when he is in the hospital but those so called recliner chairs in the rooms are getting more and more unbearable.

Rescheduled the dental appt for Wed. I am terrified to go as my mouth is such a mess. The pain, burning, and horrible taste is just right at more than I can take. I am about to go crazy with this! And....frankly I just don't want anyone to even see inside my mouth. I am a year and a half out of treatment but mouth and throat is not getting any better, in fact it seems worse. I am on a feeding tube for all nutrition as my mouth and throat is so dry. I can't get anything to go to the back of my mouth to swallow except sips of water or clear soup.

I am going to my regular dentist Wednesday but wondering if I would be better finding a specialist in oral cancer issues. Does anyone have any suggestions on this ?


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 111
Jo-

Try to find a dentist that has a verifiable history of working with cancer patients. As bad as you say things are, I'm sure they've seen worse!

If none are available, ask your oncology team if they have any recommendations.

Just don't ignore it. Push yourself and follow through. you can do it......


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
I did it !

Even though I did not have Dental trays or any instruction on care my check up and evaluation was amazing ! I had no cavities and he said my teeth looked perfect for what they have gone through. He asked me how I did it and I told him that I lightly brush my teeth 4 or 5 times a day and always rinse after sipping anything other than water. My dentist does have a lot of experience in what I am experiencing so that was quite a relief also.

He at first said I could not have a partial due to irritation to the gums and might not ever be able too. Oh course that made me cry as I am so self conscious about smiling or even talking because of missing teeth. Then he said he could make a bridge of 3 teeth for the front right. I am dancing here !

I have an appt Dec 21st for dental tray molds and we will see how I get through that before we attempt the bridge work. I have a real hard time keeping my mouth open very long at all. Although my hubby says I don't ha-ha.

Since I know things look good there I don't even mind the dry and burning quite as much this evening. Funny how a few positive words can stir us along.

Anyway, so excited tonight and feel so good about a good report for once from men in white coats ! Think I will celebrate with an extra can of Ensure !

Thank you, Thank you for pushing me.

Stopped in here to go through this site to do more Christmas shopping at Amazon, glad I did, it was nice to see your post.

Please let me know how your PT is going.


Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***

Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 111
Jo -

I'm glad you followed through!

You're right - Good news is the best foundation for a smile

PT is at a bit of a plateau....been at the same point for a few weeks. Might be time to push things a little harder.

Time will tell I guess.

Meanwhile, enjoy the good news and good luck with the bridge work.



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Jul 2016
Posts: 85
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jul 2016
Posts: 85
Keep pushing with the PT. I know it will help in the long run, just a slow, slow process. Working on Christmas here, it will be a lot smaller and calmer here I am thinking (hoping).

We have my brother here healing up. I need roller skates to go from one end of the house to the other 15 to 20 times a day. But, getting plenty of exercise. He is an all nighter type person so I get requests for coffee, egg sandwiches, etc till four or five in the morning till he settles down. The good news is he sleeps a lot during the day.

We will pick up my sister to stay with us for a few days around Christmas......now that is a true commitment as she is a real kook.......oh well I can only hope she will even remember she was here. Does not matter if she remembers or not, either way she will be a very bitter, very unhappy soul.

Getting very cold here, I hate to even go outside. The cold really tightens up my jaw and makes my jaw and neck ache even more. We are headed to Florida, the Bahamas and three other places on a cruise in January for 10 to 12 days. I know I will enjoy the warmth but not the lugging of feeding supplies.

Take care and enjoy the holidays !



Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !

*** Update... Jo passed away 12/20/17 ... RIP Jo ***


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