| Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | The most frustrating part of my recovery recently has been the way that the radiation has effected my teeth. I am very diligent about flossing, brushing, and using my fluoride trays every night, but every time I go to the dentist there are more cavities. My dentist was actually the one who discovered my cancer and who ordered the biopsy, so I really trust him. The hygienist, also, is very understanding and is very careful when she cleans my teeth (she has a cousin w/oral cancer) I guess what I am asking is how soon do we forget about all the patching, and just pull the teeth and get dentures? My dentist feels we need to wait and make sure there is no bone damage first. What was everybody else's experience?
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sorry you are having teeth troubles. That can be very painful. Dont be too quick to have your teeth removed. Even with your dental problems, it still is alot better than having dentures. If you do decide to go the denture route, you will need hyperbaric oxygen treatments (HBO). Its called marx protocol, 20 before and 10 after.
My teeth really got hit hard with the radiation. I used the fluoride trays but I still had after effects of radiation. My teeth became very loose and crooked. I could barely eat with them so I had them removed to get dentures. Unfortunately, I had my 3rd round of OC before I could get the dentures made. With all the problems I have had with healing, I will never be able to get a set of working dentures. I will be able to one day get a top set which is only for looks. This will depend on if my mouth ever heals enough to handle having the mold made. ChristineSCC 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 | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Thanks, Christine. I am fortunate that both my dentist and hygienist are aware of my problems. They both have been very supportive. My teeth aren't really painful, but every time I go for a check-up there are more cavities, it's very frustrating. But I have to be glad that even though the radiation really did a number on my teeth, it, along with the chemo seems to have stopped the cancer, at least for now. This form of cancer is really the pits, isn't it? I know that I had no idea what was involved until I actually got it. My mom died of ovarian cancer but in a way, this is worse.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | I feel your pain!. I am about 18 months post tx and doing pretty good. Still some eating ptoblems and have not regainned my weight (maybe that is OK). I had zero cavities for 30 years and I was good with my teeth, now it hs all gon downhill. I have had several cavities and a broken tooth. I am RELIGIOUS about flossing, water pick, trays, brushing. my next check up in in April. Like you I have a good dentist and I have 3 cleanings a year now. When I talked to my cancer dentist he told me to be more dilligent and if I get another cavity, use the trays twice a day
I like my teeth and want to keep them!!!!
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | My husband is also having major teeth issues. He has basically been living at the dentist for the past 6 months. He is doing everything to keep his teeth but it certainly is expensive for dental repairs. I even have the "enhanced" dental plan. I don't understand why insurance doesn't cover more when it comes to dental issues. The kicker is my husband's father was a dentist and my husband has also been very deligent with his dental care. The after affects of this cancer just seem to go on and on and on.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I now go to the dentist every 3 months instead of every six. I would like to keep my teet, too, but sometimes I think that it would be easier to just pull them. I've gotten to the point that I dread going to the dentist more than going to the cancer center!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 |
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Zengalib - you just made my day! And it was one that started out with not being able to sleep past 3:30am! Well worth staying up for, I must say. ROTFLOL! Fyi: I would also like to keep my teet, too. This is off subject, but seriously (really!) I heard about a lady that had her teet grafted to her inner thigh so that after her breast cancer surgery, she could have it grafted back to the right place and keep it where it belonged.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | They pulled all of my teeth and my gums are dead, so no dentures for this guy Oh how I wish I would have let them rot one at a time. Keep them as long as possible, It's been over 3 yrs since I had decent chewable food. I will say that now , smeeling good steak or anything cooking doesn't bother me. I grab my oatmeal and pretend. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I was one that went to the Dentist every 4 months too. even my Dentist can't believe my teeth are history.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
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