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#193434 11-29-2016 06:07 PM
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I've had hyperbaric oxygen therapy (HBOT) twice in 2008 and 2013. I'm having more dental issues and may need an invasive procedure that normally would require HBOT. It's been 3.5 years since my last HBOT treatment.

When I first had HBOT in 2008, I was told it was good for "life". Then when I needed some teeth pulled in 2013, I was told it was only good for 5 years so I repeated HBOT again.

Does anyone know what the current guidelines are with regard to the time lapsed before repeating HBOT?


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jul 2016
Posts: 85
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I would also like information on this topic ! Have an appointment with my regular dentist on Thursday and I am quite sure HBOT will be discussed.

I had 10 teeth removed before the start of chemo and radiation but due to no knowledge of dental trays I believe it is playing a big role in the shape of my remaining teeth at this point. Scared to go to the dentist, but scared not to go if that makes sense. It sure would be nice to be able to smile again without putting my hand over my mouth due to missing teeth !

My mouth being totally on fire 24 hours a day with no moisture is really getting me down. It has stopped me from being able to swallowing anything except sips of water for a long time now. Whatever I try gets stuck at the back of my throat and just stays there for hours.

I am hoping that if my dentist does not have the expertise to work with my issues that he is honest enough to refer me out to someone who does deal with post treatment problems.



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: Jun 2007
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Susan, I was told HBO should be repeated if its been more than 6 months post HBO. Im sorry but Im not aware of any new studies or info that sets up a clear cut guideline for when HBO is needed.


Jo have you gone to a swallowing therapist for a barium swallow test? How about seeing a SLP? They should be able to help you with exercises to help get those muscles moving correctly (if its possible) again.

Many members have gone to a prosthodontist or a dental oncologist at their CCC. After having rads, your mouth is not the same and must be treated with extra care. Most dentists do not have the training or skills in treating oral cancer post radiated patients. Proceed with caution!


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Hi Susan,

I'm sorry to hear of your dental issues and need for an invasive surgery. In regards to hbot, I saw the term, "For Life" being used on some osteoradionecrosis conference slides when looking into it. The only thing related to this, and hbot, I could find was, "A study showed that the angiogenesis reaches a plateau at 80 to 85% of non irradated tissue vascularity by 20 sessions; trancutenous oxygen measures remain at that level for several years." This study was done by Dr. Marx, but the full PDF I couldn't obtain, but have other excepts that explains it.

I'm not sure "For Life" term I saw on conference is referring to radiation damage, and risk for osteoradionecrosis or HBOT, but I also saw the term mentioned on other not so trusty blogs. I would go with what Christine said, who btw has more hbot experience than all of us combined. Before I went through my last hbot in 2014, my oral surgeon asked when my last hbot treatment was (2010), so time may be a factor, and I did the 20/10 Marx Protocol. I failed that, and when asking about additional HBOT I was told that it already failed twice, and needed bone debridment with vascular closure (Sequestromy), which failed too.

As you had hbot twice, and if that helped prevent osteoradionecrosis and or improved wound healing, I can't see it not being offered again, unless your surgery is like mine, mandibularectomy with a free flap, where some, including my doctors, say hbot is not really needed being it's new vascularized bone and tissue.

I hope your surgery goes well, Susan, and I hope to ask about this with my HBOT center doctor next time I see him.


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: Jun 2007
Posts: 10,507
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Susan, if you do find the right answer about how long HBO is good for please let us all know and what your source was.


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
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
Likes: 1
The short answer for me is that they are recommending HBOT again for this procedure - 20 before and then 10 after.

I do want to find out more about HBOT and I guess now I will have the opportunity. I spoke with one oral surgeon a few months ago and he seemed fairly knowledgable but unfortunately I didn't take notes nor ask him if there was a study with the information. From what I recall he stated that the oxygen level was only 40-44% after RT and before HBOT. Right after HBOT it is around 90%, and then drops to around 80% - not sure of the time frame for this drop and not sure if it continues to drop. I had asked him if I would need HBOT again if I required an extraction, and he said no.

However, the procedure they are now recommending is a little more involved. I believe it is called an apicoectomy (surgical removal of the tip of the root). I've been in considerable pain since late October. I first went to my dentist (Prosthodontist), who referred me to an Endodontists for a root canal. They diagnosed me with external root resorption (not sure what caused this). The Endodontist referred me to an oral surgeon, and the first available appointment was mid-December (ARGH).

Earlier this week I went to my ENT, who had been on an extended vacation or I would have gone to see him sooner. He put me on an antibiotic and was surprised that neither doctor prescribed one for me as the area was swollen and extremely tender. He made a call to another oral surgeon, and they had a cancellation and was able to see me the next day. The task for tomorrow is to find a HBOT facility that can fit me in their schedule really soon! Fortunately there are 4 that I know of within an one hour drive.

Christine & Paul, I think it would be a great idea if we could track down some updated guidelines on HBOT. I will see what I can find out.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Susan, yes I agree updated HBO info would be great to have and share with everyone. Thanks for sharing whatever you dig up and where it comes from. I will check a couple avenues over the next few business days as time permits.


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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The answer may be just as difficult to find as an elusive tree frog. I'm no authority for sure, but have read many, well more than many, abstracts and studies on osteoradionecrosis and HBOT, including having and reading the book, "Handbook on Hyperbaric Medicine" by Dr David Mathier, 2006 edition, and others, and never saw for life mentioned, although it's over 700 pages lol, and could have missed it. The only times were as I previously mentioned. I looked again, and it actually said, "Effects of Hyperbaric Oxygen are permanent." That's it, no footnotes or anything to work on.

I did find that HBOT is just as complex as radiation treatment. There are many indications for it, exclusions also, and has many biological and physiological effects on the patient. HBOT for Osteoradionecrosis management, basically helps the radiation damage by partial reversal of Hypocellularity, Hypovascularity, and Hypoxia, known as the three H's, Angiogenetic and Fibroblastic, and inhibits inflammation. These are just some, and it gets complex.

This morning I contacted the "Undersea and Hyperbaric Medical Society" , which seems to be one of the authorities on HBOT in the U.S., and spoke with the Executive Director, who is not a medical doctor. Much of it was as I thought, that HBOT is very complex, has many indications. and they don't know all the effects about it. He had said that one treatment often works, but each incident is different, as there are different areas that may need treatment, and some may need it twice, and is difficult to say if it's for life or not, through angiogenesis, and is really based on the individual. When I asked about where the Life idea or part of that came from and was told from Dr. Marx's studies, but he couldn't find the study when we were on the phone, but believe it may be the one I mentioned.

Next step is to look further into Dr. Robert Marx's studies, if not, maybe contact his office for direction. I was wanting to inquire about the stem cell treatment that's he's doing at the University of Miami for Osteoradionecrosis anyway.

I hope this helps anyone in their search.


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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
Likes: 6
Thank you Paul!!!

I had planned on trying to call Dr Marx next week. He is the expert so hopefully he can shed some light on this subject or at least send us in the right direction. Im sorry I couldnt call today. I have my 2 year old granddaughter with me today and phone calls dont always happen when shes here.


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
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
That's ok, Christine, and enjoy your time with your granddaughter! I have a 3yr old great niece, and don't see her often either, except on holidays. Maybe I can leave calling Dr Marx or whomever in your hands when you get a chance.


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






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