BOB438 Member Posts: 20 Member
edited September 7 in Head and Neck Cancer #1

I am starting radiation treatments this week, 35 total plus chemo.  I am concerned about what I read about bone death due to RT, called Osteoradionecrosis.  A friend of mine just developed this after five (5) years after her last RT session.  Does anyone know the statistics on having this reaction after RT?



  • SASH
    SASH Member Posts: 420 Member

    While Osteoradionecrosis is a concern, you have to think that it may not happen and if it does, it may be years away.  It took 15 years for me to develop this, but with Hyperbaric Oxygen Treatment and skilled doctors it is possible to continue living.

  • momall25ofu
    momall25ofu Member Posts: 81 Member
    edited August 2018 #3
    SASH said:


    While Osteoradionecrosis is a concern, you have to think that it may not happen and if it does, it may be years away.  It took 15 years for me to develop this, but with Hyperbaric Oxygen Treatment and skilled doctors it is possible to continue living.

    Sash, I'm happy you're

    Sash, I'm happy you're beating the osteoradinecrosis!

  • donfoo
    donfoo Member Posts: 1,770 Member
    fairly low

    Just based on the comments here it seems ORN does occur but it seems a fairly small percentage of those having radiation treatment. Main thing is to see a dentist who understands ORN and won't do any kind of procedure that could affect ORN related issues.

  • Tate1294
    Tate1294 Member Posts: 4 Member

    agree, my hsb had it develop after 16 years of the chemo/rad treatments...wish our dental hygienist had been more observant, wish he had gotten on better antibiotics before the root canal/extraction, wish we had easier access to HBOT, finally got first appt scheduled, our bad luck being Canadian...living outside a major center a definite drawback as our family doc is young and has abs no experience with late effects radiation problems....also in canada, unable to access specialists yourself, it is such a laugh, people with money just go to the States to get proper treatment in a timely fashion

  • wbcgaruss
    wbcgaruss Member Posts: 2,097 Member

    Tate, so sorry your husband is going through this. It sounds like you and your husband are handling it the best you can with the problems of getting care involved in Canada. I am hoping things start going your way and he can get the treatment he needs to resolve this.

    Of course, you already know about HBOT as a treatment.

    There is a mode of treatment that is gaining acceptance and maybe it has been used for a while, I am not sure. But my Oral Surgeon said this is what I will be getting if I need another extraction.

    Pentoxifylline and tocopherol with or without clodronate is a viable and effective treatment option in osteoradionecrosis.

    I will post some links here about it FYI--



    This person also lives in Canada

    Also recently on here another member had a good experience with his osteoradionecrosis (ORN) Mavish had what they call Photodynamic laser treatment for osteoradionecrosis (ORN). This is probably not standard treatment but he had tried or considered other options I believe and finally went with this type of treatment. This person also lives in Canada here is a link to the page his story is on you will have to scroll down to near the bottom of the page but I will post his story here also. Link- https://csn.cancer.org/discussion/318885/radiation-damage-to-bones-of-jaw#latest

    This person also lives in Canada

    Mavish's ORN Story--

    Mavish Member Posts: 76 Member

    August 18 #13

    Photodynamic laser treatment for osteoradionecrosis

    As you may remeber, I was treated for rıght tonsil SCC in 2016, with surgery and RT. I had 70 gy on the tumor site and 60 gy on rıght neck that I had the 2 positive lymph nodes.

    I am here to to share a good news with you.

    Here is the my osteoreadionecrozis story:

    Before the treatment I was told I could be back at work 3--4 months after the radiotherapy However my body responded too badly to the radiation, I had excessive ulsers in my mouth it took 18 mounths to heal. Then, I had osteoradionecrosis very early in 2018 in my upper jaw (maxilla) I did not have tooth extraction or anything to speed up or triger the osteoradionecrosis. 2 of my healty looking tooths droped on their own and left me with a big exposed bone.

    Described reconstrictive surgery sounded very complicated on its own and considering my tissues are being affected by radiation, we werent sure if my tissues would heal after the surgery.a surgery complication was high. So I chose the conservative approach not to have the surgery and wait to see how far I can go without it. I had 70 hyperbaric oxigen dives, ( normally people have 40 ish), used trentall and vitamin E, prednisolon etc.. Noting helped. I was having very frequent infection spreading to my face and neck. I was on antiobiotics for two weeks and then I would be infection free for just 2-3 weeks and it was like a visous circle. Some antibiotics started nott working. I was treated one of the best Cancer Centres in Canada and my healthcare team is great. But it was noting can be done except sugery or living with it.

    About 2 years ago, I moved to anotjer city. I found a Dentist here, and she offered me to include an Oral Pathologist in my care team. I said why not. But no good expectation, considering my bone is already dead. However, she mentioneed a use of photodynamic laser treatment. She told ORN is too big and it is in advance stage, but we can try. Idea seems too good to be true to me. I talked to my doctors they were not aware of this treatment modality. After thinking through 2 -3 weeks, I decided to take the chances as my situation was not great at the time and i already tried all the options except the surgery.

    Dr Firoozeh Samim put me on profilactic Doxycycline treatment. I think it also increase the photosensitivity of the tissues. And we started the laser treatment. Exposed bone area decreased to the 25% of its original size of 1x2 cm in the first six months but stayed there, but I kept having laser treatmets to keep it where it is. She kept me on doxycycline. A few monts ago, the exposed bone started mobilising, and I saw my surgeon, the concern was any surgery may create a hole between sinus and oral cavity which requires reconstructive surgery. So again we decided not to touch it. 3 weeks ago the dead bone came out on its own, there was a suprisingly healty well vasculirised tissue under it.

    - Officially I do not have and exposed bone or osteoradinecrosis symptoms at the moment. I will use Doxycicline for four more months and than I will be off.

    - Laser treatment was painless, was taking about 15 minutes.

    -I did not have any infection since I started with this treatment modality.

    I know that nothing will change that I had 70 gy and my body reacted very badly. I don't know what the future is holding for me. I am feeling good now.

    I am greatful to all my doctors, nurses, dietisians, dentists, dental, hygenists, physiotherapists, social workers, my family, friends, people in this group who kept me alive.

    I am constently searching photodynamic laser treatment on the internet, to se what is published about it. Recently, I fould the below page of Cleavland Clinic. It seems it is aso becoming a new cancer treatment modality including head and neck cancers.


    I am greatful to all my doctors, nurses, dietisians, dentists, dental hygenists, physiotherapists, social workers, my family, friends, people in this group who kept me alive in this journey.

    May God bless you!

    And here is a link to another posting about it-- https://csn.cancer.org/discussion/326956/photodynamic-laser-treatment-for-osteoradionecrosis

    I am hoping you find an answer to your situation and get this resolved. Also whenever I am faced with difficult situations Trusting in God and Prayer always helped me greatly.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You


  • LWT16
    LWT16 Member Posts: 2 *

    The first time I had H & N cancer was in 2011 and after 6 years it started with my jawbone was visible inside my mouth, the bone was infected and in 2018 I was diagnosed with my second around of H & N cancer. The 2017 round was the worst, it took my ability to eat, drink and talk. I have a feeding tube and I’m lucky to be here. To this day, September 2023, I am having problems with my left side of my jawbone inside of my mouth the jawbone is exposed and decaying. Keep my fingers and toes crossed.

  • wbcgaruss
    wbcgaruss Member Posts: 2,097 Member

    LWT I hope you are working with an oral surgeon or doctor monitoring this situation.

    Take Care, God Bless


  • LeeB3
    LeeB3 Member Posts: 9 Member

    I completed radiation Sept 5 2023. I started hbot the week after to prevent fibrosis and osteoradionecrosis. No insurance cost is $130 per 1 our session at pressure after hour long doctor consult $350. Im looking at 24 sessions at 2.4 ATM. complete session time is 90 mins or more. The trick. is to find a place that does not take insurance. At over 2 atm oxygen is so small that it is carried by plasma not hemoglobin and will heal damage from radiation.