Hello everyone, some of you may know I had BOT cancer stage IV beginning in 11/2014 was fast tracked given 33 rads and 3 mos of carboplaxin and taxol. Had feeding tube for 6 months, used liquid hope, vomited all other formula. In April I was clear above clavicle with one tiny hotspot on lung. Then in Aug 2015 PET showed multiple tumors bilaterally in lungs had biopsy found BOT had metastasized to lungs. Not much hope offered here at home so went to MDA. Did a trial with Avastin and Torisel. Lived there for 6 months. Got sick in March and lost housing came home. Took a break as tumors had grown and needed to build strength. In July I began Opdivo every other week and am now doing very well.

So I am now able to go to dentist, and examine found my front teeth have decayed almost through in two teeth and need them to be removed.

I saw on radiologist who suggested a dentist familiar with my treatment. I am nervous about having to have this done after 73 gamma rays, dentist and radiation Dr's are consulting.

Question; I see lots of patients who had opportunity to have teeth worked on prior. I wasn't able to do this, so now have to. Anyone else had similar problems with teeth after treatment.

Is there something I should be asking about? Can I get insurance to cover? How do I show this was caused by treatment? What are side effects of HBOT?

Can I wait until after Christmas to do? I have been doing so well on Opdivo and enjoying life. I am planning a vacation.

I didn't see this coming, is there anything I can do to help? I am good about brushing and rinsing. Recently noticed teeth chipping. So went to DDS.

Thank you. Larry

Hi Larry,

Glad to hear you're doing so well that you are considering a holiday. That's excellent.

I believe the radiation destroys the enamel in the teeth or weakens it so that tooth decay is quite common in patients post rads. Have you been using the fluoride trays (were you even given fluoride trays?)? My daughter who is a dentist advises using an enamel enhancing toothpaste as well (like Prevident 5000).

Quite a few members of the forum have had to get extractions after rads from what I can remember. I personally have no experience with this scenario. Hopefully someone can jump in and provide more information. Keep well!

Hi Larry,

Radiation to the mouth/jaw decreases blood flow to the area permanently which causes problems with healing after an extraction. Typically HBOT is recommended - 20 dives before and 10 after the extraction.

Based on your signature it seems there is still some cancer present. HBOT increases the level of oxygen in your body which from what I read could cause the cancer to grow.

I saw that your original cancer was BOT. Was your jaw in the radiation field? If not, perhaps you still have good blood flow to your jaw and healing after extractions would not be an issue. Discuss this with your doctors.

As Gloria mentioned, using fluoride trays and/or fluoride toothpaste is recommended because of the decreased saliva post-radiation. This can lead to tooth decay and cavities.

Dental issues post-radiation are common, but unfortunately the insurance companies don't like to pay for some of the treatment. In my experience the extractions were covered by my dental insurance, and the HBOT by my medical insurance. I had my 4 lower front teeth removed because they became loose after radiation.

I had HBOT twice with no major problems. I had minor vision changes and increased blood pressure, but both were temporary. The HBOT chamber is pressurized and some patients required "tubes" in the ears to help equalize the pressure.

I hope this info helped. Wishing you the best!

Have your doctors discussed root canal as an alternative instead of any extractions? If so, this usually doesn't require the need for hbot. As a last resort, would I want to have any teeth extracted until it was absolutely necessary, down to pulp, infected, etc then the 20/10 Marx Protocol hyperbaric oxygen treatments, and so forth. Radiation above a certain Gy, plus an injury, like Teeth extractions, can cause ORN, so can other injuries, like dentures, spontantaniously etc, but Extractions are the main cause with radiated head and neck cancer patients.

Good luck

They were going to crown them until DDS looked closer at X-rays. They showed me front teeth are decayed almost all the way through. Lots of bacteria.
DDS is consulting with RO. I haven't heard anything back yet. I also called my ENT and asked him to consult too.
Right now I'm cleaning after every meal using fluoride taking calcium. Rinsing with baking soda water.
Any suggestions I greatly appreciate.
Do you think I ought to have the CTX blood test first and bone mineral density?
I read somewhere cataracts can be a side effect of HBOT.
I do want to wait as I'm feeling really good right now and would like to take a vacation with kids.
What do you think of hydrogen peroxide rinses and xylitol?
Thanks everyone!

I am so following your posts as I am in the same boat as you are with my teeth. I had 10 teeth removed before I started chemo and radiation well over a year ago. NO ONE including the oncologist, ENT, my dentist or family practice doctors ever mentioned fluoride trays or HBOT treatment and still they have not. I have only read about it on this site. I am using Prevident 5000 toothpaste as well as fluoride toothpaste and warm salt water rinses. But my remaining teeth are in sad shape. You are doing better than I am as you have consulted with a dentist. I tell myself every evening to call and make an appointment but yet the next day I put it off again. I still have the feeding tube in place and therefore do not have to rely on the teeth for much (horrible excuse I know) but, am just so appalled at even letting anyone see in or touch my mouth. I know the insurance struggle is going to be massive. We are still even fighting for reimbursement on the 10 extractions. I too am planning a vacation with my husband and our grown up daughter and son-in-law, a week long cruise. It is scheduled in January. I Am hoping to wait till after the vacation to get going on the teeth issue but perhaps it is just an excuse for me to not make that appointment phone call. Please do keep us posted as to how you are doing and the treatment plan they suggest to you.

Jo

I am not sure yet I can or will do what has been suggested. I am brushing, flossing and rinsing with baking soda and salt. I also use 50/50 hydrogen peroxide. Painting a fluoride liquid on teeth.

I remembered I was on Phos Nak for low phosphorus in blood for 6 months. I currently take 100 mcr Synthroid, which lists bone mineral loss as side effect.

I had 44 73 gamma ray radiation for 3 months in 2014/15. I am currently still fighting metastic lung cancer with Opdivo.

My quality of life is good. I am thinking a second opinion on removal of teeth. Does anyone have any suggestions? I can travel.Also need to get insurance on board.

The HBOT is bothersome to me due to possible side effects (eye problems) I have very good eyesight and I am an artist, my eyes are very important to me.

It's been suggested I have HBOT, but it is my understanding (from research) shouldn't do HBOT if currently under treatment and have cancer.

I have multiple bilateral lung nodules, which have so far, responded to Opdivo. Some have shrunk. I've only been on Opdivo for a few months. It's working, I don't want to mess with that.

Does anyone know if my taking Phos Nak a problem that could lead to ONJ?

Also should I have a CTX blood test and a jaw CT? Had a 180 X-ray at DDS.

So far only two Dr's who have consulted are RO and DDS.

Thinking I should see ENT and ask him, he was one who initially warned me against any surgery in H&N area. He's been my touchstone through all of this.

I need to speak to my Onc, I've been doing well so only saw NP last two infusions, I told her, but haven't see him in a month.

My quality of life right now is good, I don't want to do something to change that. I am in no pain. Front teeth look dark are pulling away from gum line. Teeth are stained.

Thank you,
Larry

Hi Larry ! Funny you mention the low phosphorus. I have been dealing with an incredible amount of kidney stones since I started on the liquid nutrition. Four stone surgery removals since March with more on the way. Last surgery they said there were over 100 still there. One was a massive 23 mm and many at 12 -14 mm which can not be passed. The kidney doctor thinks I am getting way to much phosphorus and oxalate. So, I have been studying what foods I can blend to put through the tube that are low phosphorus and oxalate but high calorie. Sounds like Your ENT Doctor would be a great place to start and yes the RO too. I sure can understand your concern with your eyes and getting HBOT. I read and sew most of my day and eyesight problems would be very devastating to me. I can imagine how scary it would be for you as an artist. I also worry about making any more problems as I am doing so-so right now and thank goodness my teeth do not hurt. Hopefully we can keep in touch and compare notes as we check with our Doctors about HBOT.

I saw ENT yesterday he ordered CTX blood work. He doesn't want me to have extractions as my chin was close to base of tongue and believes it was radiation that caused this. I really like him he is my favorite Dr. He said he'd call RO and explain everything. I explained RO hadn't seen me in a year and didn't know I as on phosforus for 6 month while on clinical trial. He said he'd tell him.

ENT did say if tooth falls out I may need HBOT. He said it's not fun. But might be necessary if bone is exposed.

Then I called my ONC and he said absolutely not while I was still taking treatment.

So I haven't heard back from DDS. I am leaving it to the Dr's to tell him.

So I am trying to do my best with teeth and keeping mouth moist. Taking calcium with D.

Evoxac for saliva.

The top of my front teeth are jagged wife thinks maybe DDS could smooth and coat. She remembers having that done o a tooth she chipped.

Thanks for any suggestions.

"Jo I am sorry you are having so many problems. I am glad you have such a good attitude. I think trying to do the best with what we have is Impt for our well being. Bless you"

You are getting some answers which seem to be pointing to no extractions and no HBOT. And these answers are coming from the doctors that you trust. How long is the cruise you are planning on going? If it's just a week or two, maybe you could just go and deal with the nagging issues when you return since there doesn't seem to be anything you can do on the horizon other than daily oral hygiene work.