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Joined: Nov 2009
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Pam M Offline OP
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Team,

In a panic about teeth now. Starting work for 2 crowns in a.m. My dentist says I'll be fine for radiation after the crowns are done, but I don't think he has much, if any, experience with head-radiation patients.

I've read here that some get all their teeth pulled, some problem teeth and some back teeth. I've also read some horror stories of jaw destruction down the road because teeth became a problem.

Do most ROs refer to a dentist specializing in cancer patients? I contacted my local dental assn, and they had no idea how to find such dentists - suggested I call a few oral surgeons to see if they knew of any.

What have some of you done, and why? I'd appreciate your input.

Thx,

- Pam


44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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My MO said we may mess up my teeth, but not to do anything up front since mine were in good shape. RO did not bring it up other than to look at them himself.
I have had no problems since treatment other than some sensitivity. The feedback I got was that if you had good teeth it would not be a great problem. So far so good for me.


Flip
_________________________________
Age: 54 SCC Tonsil + 3 nodes
Radiation and Carboplatin
Treatment 4/1 - 6/7/2009
No surgery, no PEG
Never smoked
Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years)
CT 11/4/09 No sign of envolvement in Tonsil or nodes
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Find a specialist who is familiar with oral cancer patients. I think that type of dentist is called a Prosthodontist.

Some people who dont have the best teeth will have them pulled before tx starts. Others will use a floride tray and be meticulous with their dental care. Sometimes this doesnt work and some patients will lose their teeth due to radiation damage. Thats what happened to me.

Everyone is different and can have their OC be at different places. Radiation's focus would be at all different angles.


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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There was a time, prior to IMRT, where the radiation path was broader and the resulting damage was greater where it was common for the doctors to recommend pulling all the bad to marginal teeth which usually meant pulling them all as the previous typical oral cancer candidate was a long term tobacco and alcohol abuser with poor oral hygiene practices. Since the use of IMRT we have also seen a different "typical" oral cancer candidate where there teeth are usually not bad to begin with so most now only recommend pulling any that need to be pulled and protecting the rest with daily fluoride treatments usually beginning prior to the beginning of rad.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Pam M Offline OP
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Thanks, guys, for your input. Luckily for me, some of the financial pros where I worked as an admin assistant over 5 years ago found out about what's going on with me. One called me up and was insistent about wanting to do something. I told him about my dental quandary, and he got back to me right away with the name and number of his dentist, who has experience. I saw him yesterday, and he recommended I keep all my teeth, so the money I just unloaded (and next pile I'll hand over near Christmas when I get my crowns) won't be yanked out of my head at the end of the year.

On the water pik front - I asked both dentists, and was given a "go ahead and use it, but be careful". My dentist recommended a low to med low setting only. ("Lots of water pressure can actually force bacteria deeper down than it would penetrate on its own.") The "experienced" dentist also recommended something like a Sonicare automatic toothbrush because some people have fatigue, and the brush does the work for you. I think I'll hold off on buying that, and trust that I won't be that fatigued (yes, fingers are crossed, and I did knock wood).


44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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ccw Offline
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Hi Pam,

I have been using toothpicks, in a double toothpick holder, to run along my gum lines as part of my morning dental routine.
I also use toothpicks to press between my teeth (again in the morning, using the same type of double toothpick holder). I then clean between my teeth at the gumline (molars only) using one of those small round brushes. I use a manual toothbrush in the morning. Note that my periodontist liked the toothpicks and my regular dentist liked the small round brushes (I had a root planing several years before my cancer treatment).

In the evenings I floss. I use a Sonacare toothbrush in the evening.

I recall my feeling some pain in my gums during radiation treatment due to pressure, but I'm quite sure I kept up this routine, except maybe just doing lighter manual brushing only due to painful gums.

Of course, I also used (and continue to use) sodium flouride twice per day (using trays).

I am more than 3 years out of treatment, and continue to get kudo's on each 6-month cleaning.

So, I did and continue to do nothing super fancy, but so far my routine has been effective.

Best wishes,

Chris


SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
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Pam M Offline OP
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Chris,

Thanks for the info on your regime. A couple of questions, if I may:
Double toothpick holder? Are these found with other dental care items?

Which Sonacare do you use?

- Pam


44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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Chris, you made the right decision. My first RO told me I'd lose all my teeth and painted a horror story. I dropped him for his lack of bedside manners - he was laying this on me the day after my surgery. Two years out from tx and no issues with teeth.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Pam:
My husband was diagnosed with SCC IVA BOT a little over a year ago. He also received TPF (Taxotere, 5FU, and Cisplatin) x2 and then 35 RT with weekly Carboplatin, Erbitux, and Taxol. He developed the worst mucositis the doctor has ever seen so trays were out of the question as was any kind of mouthwash. he had 12 extractions prior to treatment and it was put to us like we had no options other than removal. This came from MO, RO, and dentist. since treatment ended, he produces zero saliva. he rinses umpteen times a day and brushes 3 or 4 times but his gums continue to recede and cause abcesses. He has lost 3 teeth in the last two months. We are looking for a dentist ourselves with HNC experience as we think he is going to have to have all teeth removed and dentures.
**** ON A HAPPY NOTE **** Had PET scan in July and MO used the words CURED so we are going to take him at his word.


Traci
*******
Spouse to Lew (59)(5 family members DX)
SCC IVA/T1N2M0 BOT DX 9/08 /Tonsillectomy(cl)/ TX 12/08 (TPF)x2 /RT x35 w 7 wkly (Taxol, Carboplatin, Erbitux) Finish 4/09 / Port /no peg lost 105lbs/ 2/10 CT clear/HBOT x30/all teeth out and implants placed
www.asilentepidemic.webs.com
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Pam M Offline OP
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Traci,

Thanks for writing - I'd trade teeth for CURED any day - good to hear. Paranoid now, because I've got some swelling next to one of my temporary crowns - don't get permanent crowns until Dec. 23 - can't get fluoride trays fitted 'til then.


44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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