ORN

JustOneMore
JustOneMore Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
Anyone had experience with treatment plans for ORN (osteoradionecrosis)? My husband was diagnosed with this today after getting is CT results. Wondering if anyone else has had experience with treatment plans, etc.

Many thanks

Comments

  • micktissue
    micktissue Member Posts: 430
    #2
    osteoradionecrosis (ORN)
    I had to look that up. Just in case anyone else is curious, ORN is when bone loses its ability to rebuild new bone tissue due to the effects of radiation. Medscape describes it as "degradative [necrotic] function exceeds new bone production." The web page also details treatment which utilizes hyperbaric oxygen therapy - http://emedicine.medscape.com/article/851539-overview

    Cases of ORN are "rare" when grays are below 60, but have been reported in cases between 50-60 grays.

    I have no experience with this.

    Best,

    Mick
  • HAWVET
    HAWVET Member Posts: 318
    #3
    micktissue said:

    osteoradionecrosis (ORN)
    I had to look that up. Just in case anyone else is curious, ORN is when bone loses its ability to rebuild new bone tissue due to the effects of radiation. Medscape describes it as "degradative [necrotic] function exceeds new bone production." The web page also details treatment which utilizes hyperbaric oxygen therapy - http://emedicine.medscape.com/article/851539-overview

    Cases of ORN are "rare" when grays are below 60, but have been reported in cases between 50-60 grays.

    I have no experience with this.

    Best,

    Mick

    Mick, thank you. I did not know what ORN was.

    Anyway, JUSTONEMORE, this is a very good forum for discussion of cancer issues. I am not familiar with the cancer. Although I do not visit as often, I have seen many excellent responses. In your particular case, I think you would receive more responses if you reposted this thread under "Bone Cancers"
  • micktissue
    micktissue Member Posts: 430
    #4
    HAWVET said:

    Mick, thank you. I did not know what ORN was.

    Anyway, JUSTONEMORE, this is a very good forum for discussion of cancer issues. I am not familiar with the cancer. Although I do not visit as often, I have seen many excellent responses. In your particular case, I think you would receive more responses if you reposted this thread under "Bone Cancers"

    ORN is not cancer
    Just FYI, ORN is bone degradation as a result of radiation where the bone cannot regrow tissue causing necrosis.

    Best,

    Mick
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    micktissue said:

    ORN is not cancer
    Just FYI, ORN is bone degradation as a result of radiation where the bone cannot regrow tissue causing necrosis.

    Best,

    Mick

    ORN
    Must be the problem I have in the Jaw bone, never understood it before
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #6
    Hondo said:

    ORN
    Must be the problem I have in the Jaw bone, never understood it before

    ORN
    I completed my chemo+rads treatments for base of tongue MEC in May of 2009. About a year later I started to get ulcers in my mouth that exposed dead bone tissue. The docs first thought (hoped) that it was a one-time deal (acute), but I had more of them as time went on (chronic). I completed a series of hyperbaric treatments from July to October of 2011, and had one tooth extracted. About three weeks ago I had a consultation with my oral surgeon who told me my healing was behind schedule, and gave me another "wait and see" period in the hope that things would turn toward the better. It now appears that the healing is not happening at the rate it should (I had a new ulcer this week), and I have a consultation next week to see what the next step might be.

    ORN is progressive--it must be stopped or it will continue to degenerate bone tissue in the area that got radiated--and spread. Only about 10% of people with HNC and radiation treatment get ORN, but those who do get ORN face a whole different set of problems. If anyone out there is in the same boat, I would be grateful to hear about your experiences, and to know more about my options.

    Mike
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    Mikemetz said:

    ORN
    I completed my chemo+rads treatments for base of tongue MEC in May of 2009. About a year later I started to get ulcers in my mouth that exposed dead bone tissue. The docs first thought (hoped) that it was a one-time deal (acute), but I had more of them as time went on (chronic). I completed a series of hyperbaric treatments from July to October of 2011, and had one tooth extracted. About three weeks ago I had a consultation with my oral surgeon who told me my healing was behind schedule, and gave me another "wait and see" period in the hope that things would turn toward the better. It now appears that the healing is not happening at the rate it should (I had a new ulcer this week), and I have a consultation next week to see what the next step might be.

    ORN is progressive--it must be stopped or it will continue to degenerate bone tissue in the area that got radiated--and spread. Only about 10% of people with HNC and radiation treatment get ORN, but those who do get ORN face a whole different set of problems. If anyone out there is in the same boat, I would be grateful to hear about your experiences, and to know more about my options.

    Mike

    ORN is unfortunately one of the more severe
    late sequellae of irradiation for ENT cancer. There are a number of people who post on this board who have, or have had the problem. Prevention of this problem is the singular reason we are recommended, after irradiation, to get hyperbaric oxygen prior to extraction of our molars. But as your experience demonstrates, it doesn't always work.

    The ENT oncologist who did my several surgeries for cancer frequently does reconstructive surgery for people who have ORN of the mandible. And I'm sure his practice is representative of the specialty. Surgical reconstruction of the jaw is a big deal. It involves removal of a portion of the fibula (the smaller bone in the lower leg, and transplanting that bone, along with its blood supply, to replace the devitalized portion of the jaw. The results are actually very good, but it is a long, involved surgery with a lengthy in hospital, and at home recovery.

    Others who have actually been through this surgery are around, though I cannot name one for you at the moment. Hope this helps.

    Pat
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Mikemetz said:

    ORN
    I completed my chemo+rads treatments for base of tongue MEC in May of 2009. About a year later I started to get ulcers in my mouth that exposed dead bone tissue. The docs first thought (hoped) that it was a one-time deal (acute), but I had more of them as time went on (chronic). I completed a series of hyperbaric treatments from July to October of 2011, and had one tooth extracted. About three weeks ago I had a consultation with my oral surgeon who told me my healing was behind schedule, and gave me another "wait and see" period in the hope that things would turn toward the better. It now appears that the healing is not happening at the rate it should (I had a new ulcer this week), and I have a consultation next week to see what the next step might be.

    ORN is progressive--it must be stopped or it will continue to degenerate bone tissue in the area that got radiated--and spread. Only about 10% of people with HNC and radiation treatment get ORN, but those who do get ORN face a whole different set of problems. If anyone out there is in the same boat, I would be grateful to hear about your experiences, and to know more about my options.

    Mike

    Hi Mike

    Sorry to hear you may have this beast on top of all your other problem. I am looking at HBO treatment to get 4 teeth pulled out, I been radiated twice so don’t know what to expect.

    Take care
    Hondo
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #9
    Hondo said:

    Hi Mike

    Sorry to hear you may have this beast on top of all your other problem. I am looking at HBO treatment to get 4 teeth pulled out, I been radiated twice so don’t know what to expect.

    Take care
    Hondo

    My HBO and ORN experiences
    Hondo, rather then take a lot of space to tell you about my HBO, here is my blog address:

    http://mikemetzlerbeatscancer.blogspot.com/

    The last few posts are from that period in my treatment, just this past summer and fall. Anyone else who wants to read the blog is certainly welcome. It is in reverse chronological order, so if you want to start at the beginning, scroll down to the bottom of the list of posts.

    Mike
  • ljoy
    ljoy Member Posts: 94
    #10
    ORN
    I had the experience in 2010 5 years after treatment for tonsil cancer. Here is a repeat of my post from May 2010.


    I just completed hyperbaric treatment and oral surgery for Osteoradionecrosis (damage to bone and tissue from radiation). I had a lower molar loose. When I went to the dentist he said I needed to see an oral surgeon. It was determined that the damage was such that without hyperbaric treatment it would not heal after surgery.

    I would recommend you find an oral surgeon that is up to date on radiation treatment for head and neck patients. Your Radiation Oncologists should know who to recommend.

    I'm two months post op and everything is healing according to plan.

    Two years later everything is fine. No further problems. Bone looks good in recent panarex with oral surgeon.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Mikemetz said:

    My HBO and ORN experiences
    Hondo, rather then take a lot of space to tell you about my HBO, here is my blog address:

    http://mikemetzlerbeatscancer.blogspot.com/

    The last few posts are from that period in my treatment, just this past summer and fall. Anyone else who wants to read the blog is certainly welcome. It is in reverse chronological order, so if you want to start at the beginning, scroll down to the bottom of the list of posts.

    Mike

    Hi Mike
    Amazing story you have there. I work for one of the biggest Offshore Diving Companies in the world so doing HBO to me is like everyday stuff. We have some divers who live inside the chambers for up to 40 days at a time and we can blow them down to as far as 1000 feet if needed. I am not able to do that as I need to be free, 40 days in a little room with 6 to 8 other men is just too much for me. So I don’t see 40 days of 2 hours a day as being too bad, if that is what’s needed.

    Thanks for sharing your story and hoping all goes well for you my friend
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    ljoy said:

    ORN
    I had the experience in 2010 5 years after treatment for tonsil cancer. Here is a repeat of my post from May 2010.


    I just completed hyperbaric treatment and oral surgery for Osteoradionecrosis (damage to bone and tissue from radiation). I had a lower molar loose. When I went to the dentist he said I needed to see an oral surgeon. It was determined that the damage was such that without hyperbaric treatment it would not heal after surgery.

    I would recommend you find an oral surgeon that is up to date on radiation treatment for head and neck patients. Your Radiation Oncologists should know who to recommend.

    I'm two months post op and everything is healing according to plan.

    Two years later everything is fine. No further problems. Bone looks good in recent panarex with oral surgeon.

    Hi Joy
    Glad to hear after two years you are still doing well. I been radiated twice to the same place on the head & neck so there are a lot of other problems with me that make doing anything on the head a big problem.

    You might say I am a real Headache Ha ha ha
    Hondo
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #13
    longtermsurvivor said:

    ORN is unfortunately one of the more severe
    late sequellae of irradiation for ENT cancer. There are a number of people who post on this board who have, or have had the problem. Prevention of this problem is the singular reason we are recommended, after irradiation, to get hyperbaric oxygen prior to extraction of our molars. But as your experience demonstrates, it doesn't always work.

    The ENT oncologist who did my several surgeries for cancer frequently does reconstructive surgery for people who have ORN of the mandible. And I'm sure his practice is representative of the specialty. Surgical reconstruction of the jaw is a big deal. It involves removal of a portion of the fibula (the smaller bone in the lower leg, and transplanting that bone, along with its blood supply, to replace the devitalized portion of the jaw. The results are actually very good, but it is a long, involved surgery with a lengthy in hospital, and at home recovery.

    Others who have actually been through this surgery are around, though I cannot name one for you at the moment. Hope this helps.

    Pat

    ORN surgery
    I do understand that the results of surgery for ORN are generally positive, but also that the procedures are painful. If it comes to that I'll just have to get ready for what lies ahead. And, that's the challenge--gearing up for another chapter in the battle against cancer/treatment side effects after 2+ years of progressively feeling better. It's as much about the mindset of it all as it is about the physical realities of my situation. If you do recall others who have gone through this, please put me in touch with them.

    Mike
  • jim and i
    jim and i Member Posts: 1,788 Member
    #14
    Sorry to hear
    about this side effect. I do not know anything about ORN except what was explained here but I will be praying for you.

    Debbie

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