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John N Offline OP
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I had IMRT 3 years ago and only have 1 saliva gland and have been sporadiaclly using the dental trays with floride. I was wondering how some long term (5+ years after radiation)folks teeth have been holding up with the reduced saliva, if some have experienced any advance decay from the reduced saliva and if any one had problems did they use the trays with floride.


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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Hi John,
I have 4+ years with similar conditions, tonsil treatment, IMRT and I see a hygenist 4 times a year, rather than the 2 that insurance pays for. I still floss daily, use a Water Pik and in home flouride treatments. I have had a few filings replaced and some minor repairs. They have started using digital xirays to visualize areas that they cannot see (like plaque buildup between the teeth)and the hygenist does below the gumline cleaning, with ultrasonics as well. Certainly the radiation was very hard on the gums and I have grown much "longer in the tooth" as a result. The roots are far more vulnerable and you have to even more diligent with oral hygiene - and for life at that.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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John,

I was treated 18 years ago -- had at least one salivary gland removed during surgery and most of the others fried during radiation (that was long before the days of IMRT or amifostine). Over the years, it's been a combination of water, Salagen, Biotene products, and sometimes sugarless gum that have helped keep my mouth reasonably moist.

I brush my teeth at least 3x daily (mostly with an Oral B Plaque Remover electric toothbrush), use fluoride fairly frequently, floss every day, and have cleanings every 3 months. (I have a regular rotation where 2 of the 4 annual cleanings are done by my periodontist's hygienist, so I get his examination at the same time.)

I'm now 57 and still have all my own teeth. From time to time I've had fillings done, and a couple of gum grafts, but haven't needed any extractions so far.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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John, I received traditional radiation to cure my tonsil cancer more than 5 years ago and lost all my saliva glands. I am glad that I still have all my teeth alive today without using any tools or medicine to keep them. Like Cathy, I brush my teeth after each meal and before sleeping. My teeth decay faster than healthy people and so I need to go to the dentist more frequently and have more fillings done. I refrain from eating sour or sweet food or drink and if I do, I will brush my teeth immediately or rinse my mouth with water, if I am not home. I often take sugar free gum to moisten my mouth and this can also help clean up my teeth a little bit.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Hi John,

You don't mention if you are experiencing any major decay problems or maybe you are just looking down the road. You have gotten some very good home care advice from 3 members who obviously take their situation seriously. You can never do too much in the way of caring for your teeth.

As Gary points out, the roots of the teeth are more vulnerable to decay than the crowns which are covered with enamel. Roots have no covering that is strong and somewhat decay resistent. Use of flouride trays will be helpful for the roots, as well as the crowns.

Gary, I have a question for you. Were you told that digital x-rays will show plaque on the teeth? I can't imagine that this so, but if you were told this, I would be very interested in doing some research on this.

Karen, I have a question for you. In regard to sour foods, were you told that these foods cause cavities? Again, I would be interested in checking this out.

Cathy, great toothbrush. I use the same one.

I do learn so much from this forum and there is always room for more knowledge. When I read something that I have never been taught or heard of, I feel compelled to "check it out".

Thanks and good luck John with your home care.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Oh they definitely do -I saw it for myself. It was really not the plague on the visual surfaces as much between the teeth. If their mechanical probe would catch on something they would x-ray it. They watch me very closely. My dentist has every high tech gadget available: computers in each exam room, , HIS/RIS patient database and electronic retrieval of all patient records, scans, x-rays, etc. Porecelain, laser, CAD/CAM crown/filing manufacturing machine.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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I see and I think what they were referring to was calculus (tartar) which is visible on regular x-rays as well as digital x-rays. Plaque, being a sticky film of bacteria, is not visible on any type of x-rays. Please understand, I'm not being picky, just concerned that incorrect information might be posted.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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wilckdds.
Yes, the dentist told me to refrain from eating both sour and sweet food or drink. I know that lemon tea is particularly bad for teeth.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Thanks Karen.

Keep those emails coming.

Anyone else want to join our email swap club? So far it's Karen, Gary and me. We are very selective. Nothing offensive.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Yes is was calculus, but I could have sworn that they said it forms from plaque. I trust your expertise.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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Hi,
I'm glad this came up. I thought fluoride treatments were something of necessity that had to be done daily for the rest of our, hopefully, very long lives. Isn't that right? I didn't think it was an occasional thing to be done once in a while.
My husband will finish his rad therapy tomorrow.
Throughout his therapy there were 2 nights when he just didn't want to do it and it kind of bothered me. I was going to call the dentist and check on it, but since it came up here, I thought I'd get some of your feedback.
Thanks.
Vicki


Care giver for Stage IV Base of Tongue TXN3M0
Neck Dissection 1-9-07
IMRT & 8 weekly Cisplatin
2/20/07 - 4/17/07
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Jerry,

I was told something similar to Karen in that the acidic foods that are often sour are more damaging after radiation.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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John N Offline OP
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Thanks for all your feed back and luckily I have no problems, just wanted to see long term what everyone is doing and successes they have had to share what works so I can ensure I'm going down the right path.


SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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Gary,

Not to beat a dead horse. One more point of clarification. Calculus is calcified plaque. That is dead plaque. Plaque is a living substance made up mostly of bacteria. So the calculus does come from the plaque and there is always plaque on top of the calculus. However, before plaque calcifies and it is in it's early stages, it is just a film and cannot be detected on x-rays.

With all the knowledge that you already have, now you can probably pass the dental exam.

Ed,

I never thought about it from the acidic point of view which now makes it very obvious. We spend so much time telling our patients to limit sweets, that we develope tunnel vision. Thanks to you and Karen for the follow-up.

John,

Happy to hear that you are not having problems. You must be very faithful with your homecare. Keep up the good work.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Hi John, I am perhaps going to catch flack for admitting that my teeth are holding up well in spite of the fact that I have not been using floride very often. I do see the dentist every 6 months. So far my dental coverage dosen't get me in any more often than 6 months.

As said, my teeth are holding up well with brushing 2-3 times a day. I feel the toothpaste with tartar control works well.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Hi Mark,

Happy to see you back. Have been meaning to email you. Hope all of you is well, in addition to your teeth.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Mark... and I thought you had passed away, but it turns out you were just in Minnesota. Good to see you back smile


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Brian, Good to see you too....

Really, there are worse places than Minnesota, I mean check out N and S Dakota for instance, and then there is Wisconsin they couldn't even keep first place in cheese production. Of course Iowa is only there so that candidates have a place to start that really doesn't matter.

I just realized this will be my 1200th post here and I guess it should be more memorable and profound. I didn't think I'd be away from here so much. I'll post a note in the general forum (or survivor forum) to fill in the last 6 months. I am sad to see how many new faces there are here since I took my sabbatical.

Jerry, feel free to e-mail any time.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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I think this is the first time a saw Brian show his sense of humor. I'm sure we all have one, but unfortunately most of the time, we have to concentrate on healing words. Brian I owe you a phone call or at least an email. I got your message yesterday. I have to get my photos from the walk on a CD and out to you this weekend.

Mark, congratulatons on you 1200th post. It is quite remarkable (get it re-MARK-able) and can you imagine if you hadn't taken 6 months off, what number you would be at. I still appreciate the hour you spent on the phone with me 2 years ago when I was going through the healing process.

You can count on an email within the week.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
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Jerry,
I must admit that those emails you sent to me are fantastic and really worthy of seeing. It will be nice if there are more members who want to share these mails to make their life more interesting and enjoy a sense of humor that many are missing when fighting the battle.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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Hi all,

Just dropping in after some time. Mark, glad to 'see' you again!

My experience with teeth...I didn't have IMRT and of course lost saliva. Unfortunately I wasn't informed of fluoride treatment until I met this board, too late for my poor teeth. I didn't get trays for over a year (probably my fault as well as I don't like visiting dentists, only when desperate).

It's been 3 years since the end of radio and I've had numerous fillings and endured 5 root canal therapies over the last 12 or so months. OUCH! The last one was finalised a week ago, and it was hell. I had apical periodontitis, and was on anti-inflammatories, not much else you can do. Couldn't eat much so I was back on the banana smoothies (which I don't mind, especially with chocolate Sustagen!)

All I can say is that I'm a 'tad' cranky that I wasn't informed well enough about the dental problems and am paying for it now mad Everyone is so apologetic...And yes, I'm sure I've paid off my dentist's mortgage, and given the staff at my insurance company a holiday each! wink

I've also had an ulcer for 7 months on my rear inner cheek. I saw the Oral surgeon again last week and it isn't cancerous, thank whoever. The best cure? Tea bags, for the Tannin component. I also managed to be supplied (from a scientist friend, as it is not available over the counter) some Tannin powder which I mix with Glycerine and apply to the ulcer. Tastes awful, but if it's fixing the ulcer I don't mind. Nothing compared to surgery, radio, fillings, and those root canals! laugh

Cheers!

Tizz
(My dentist is pleased that I have saliva back, as he mentioned that he didn't think my teeth would hold up for much longer without...)


End of Radiation - the "Ides of March" 2004 :-)
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Flossing is a really good thing. I try to floss as many times a day as necessary (usually 2x for molars and bicuspids or teeth in the back). If any bleeding occurs anywhere I floss more in that area until it goes away. My opinion is that 2 x a day is a minimum if the mouth is dry.


Dx 10/06 Adenoid Cystic carcinoma; Stage I. Soft palate/minor salivary glands.
Tx surgery 11/06 Tomotherapy (targeted IMRT) 3/07
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