| Joined: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 247 Likes: 1 | I have been hesitant to post on this topic once again. I am actually afraid of what I might hear back. Some background - Bob is 6 yrs. post chemoradiation. Last year a tooth was extracted, HBOT prior and after. No problems healing. 6 months later, sudden jaw pain & swelling, cleared with antibiotics. Pain has now returned.
I, of course, have been worried about ORN since initial dental problem. We have a wonderful local oral surgeon who advised consultation at cancer centers. We went to a dentist consulting at Dana-Faber in Boston and NYC. Bob is now at Institute for Head, Neck, & Thyroid Cancer, Mt. Sinai Hospital, NYC (several hrs. from our hone). Oral Surgeon, Dr. Daniel Buchbinder and ENT, Dr. Urken.
Based on 3D cone beam scan, the dx is very early stage necrosis of mandible. In addition, another tooth needs extraction. The team offers some hope that progression might be gradual, but no real way to determine how it will go.
My questions: - I forgot to ask when cutting tooth down, leaving root intact is done. I will ask MD this directly, but wondering if anyone has info.
- I believe an Australian poster was advised to grind teeth down and let them fall out on own.
- Is there anything else I should do?
My husband is taking this in stride. I want to trust this team, but am anxious about lack of clear protocols and depressed about jaw replacement in our future.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I'm sorry to hear this. I am a proponent of the positive studies done in Europe using a protocol called PENTOCLO. Pentoxyfilline/alpha-tocopherol/Clodronate. We can't get Clodronate in the US and it is called PENTO here. The people in the studies for the past decade have shown very good results. Here is a summary of the latest study from UCLA. http://c.ymcdn.com/sites/www.scdaon...terials/The_Efficacy_of_Pentoxifyll.pptxI do know from experience that it takes me a certain level of exercise/exertion to see results but it is miraculous. I believe this has prevented serious deterioration of the non-marrow producing cervical vertebrae. The improvement in blood flow has helped regain and maintain significant muscle.
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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Pam42 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | You're in good hands with these two doctors. It's really Beth Israel, but Mt. Sinai took Beth Israel, and their other hospitals under their management several months ago, but still keep their former names. I was just there on Thursday, Mt. Sinai Beth Israel, Union Square, but I see a different Oral Surgeon.
Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I agree with Ed. Our Hospital Dentist recommended the PENTACLO protocol for Kris. However , we decided to have all his teeth root Canalled and crowned. We too , now have to wait and see . Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Sorry to hear about the ORN. Not much to offer what to do. One thing I picked up along the way other than the standard HBOT is having a specialist who is very familiar with oral cancer survivors and is part of a team including the RO who brings in the details of the radiation plan and treatment into the discussion.
This makes a lot of sense to me as it provides much more detail where potential bone damage is likely and what might occur if teeth are extracted in those areas. Areas not receiving much radiation should be less risky than areas that were hit hard.
If one subscribes to the goal of leaving the tooth and bone alone then grinding teeth to the gumline seems like it provides more time and less disruption to the bone area.
I collect as much knowledge about ORN but hope to never have to open that folder.
Good luck, keep us updated.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | As far as letting all, even one, teeth grind down to the gum line can be painful with the nerve intact, have risk of infection, as was my experience. Root canals are an option, but for 32 teeth? Plus being capped sounds expensive, and is not covered by Medicare. I need all my teeth removed now, and are down to the gum line, and have chronic infections, abscesses, which any can turn serious, been on an off antibiotics two years, did HBOT, so I need them surgically removed, which surgery is scheduled for next month under anesthesia. I'm going for my 3rd pre-op exam due to the delays. No plans for dentures yet, not covered by medicare either, one step at a time.
There are no clear answers, and different in each case. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 247 Likes: 1 | Thank you all for responding.
PaulB - we were also at Union Square this past Thursday. I'm glad to hear that you have confidence in this team. That does help me. No clear answers make me crazy!
Uptown - I am unable to open the link, but have made note of PENTOCLO.
Tammy - Can you tell me amy more about how you decided on root canals/crowns? That was in place of PENTOCLO protocol?
Don - yes, an entire team is involved, as you mention.
We were advised that it was too late to perform root canal or cut down the wisdom tooth that was removed last year. Something showed up on x-ray in 2009, one year post tx. At that time, RO & oral surgeon recommended not to do anything, as long as tooth was asymptomatic. By the time tooth starting hurting, we were told there was no choice, it had to be extracted. I do understand the advice to not disturb the jaw ahead of time.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote]We were advised that it was too late to perform root canal or cut down the wisdom tooth that was removed last year. Something showed up on x-ray in 2009, one year post tx. At that time, RO & oral surgeon recommended not to do anything, as long as tooth was asymptomatic. By the time tooth starting hurting, we were told there was no choice, it had to be extracted. I do understand the advice to not disturb the jaw ahead of time.[/quote] I'm curious about the events after 2009 when the xray showed something. How often was his teeth rechecked during that time? At each visit, was he told things looks the same then all of a sudden years later he hears "too late"?
Your experience will provide many of us here with more things to watch for as each year passes and we protect our teeth. Thanks
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 247 Likes: 1 | Don,
Oral-Maxillofacial Surgery report: 2009 xray suggests increase in periodontal ligament with potential furcation involvement. Early signs of apical pathology associated with #17 may be result of radiation induced ischemic changes. Patient is clinically negative. Suggest endodontic evaluation, observation, proceed when symptomatically mandatory. RO agrees. Endodontic eval on #17 was negative. Several other root canals performed.
Since 2009, teeth cleaned and checked every 4 months. Periodic bite wing and panorex xrays. No changes noted on #17.
9/2013, dull aching pain. Consultations with oral surgeon at Dana-Farber Cancer Center & local oral surgeon. Both agreed irreversible pulpitis & periapical periodontitis. I asked exactly what you are asking - why was this not picked up sooner if his teeth were being closely monitor? I was told that teeth sometimes have a smoldering infection that is not detectable in early stage. I don't know if that is really true.
I have read some studies that I will try to summarize and post tomorrow.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote]a smoldering infection[/quote]Humm.. I looked that one up and could not find it, must be quite rare.
So during that four years he was going to a general dentist for cleaning and checks? If so, it is surely possible something subtle might be overlooked or below any threshold to mention or take action on a non-radiated HNC survivor.
Reinforces finding a dentist who really does have experience treating radiated HNC patients as our mouths don't behave or act the same as the general public. I'm not implying that is what happened here but one does wonder.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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