Hi Elaine,
I had radiation therapy in 2013. My gums started pulling away maybe three months after treatment. I have been fastidious about oral hygiene and still I have lost three molars on the side of radiation, which is my right, because infections reached the roots. When I had the last molar out, well, I thought, one molar less to take care of. Have been chewing on my left side forgive years, and I am just happy to be alive. I know some other people that have had the same happen with oral cancer and radiation. I hope this info helps.

Shouldn't the doctors tell us this could happen when we have this treatment?

Hi Elaine. I have had dental problems after radiotherapy. The two bottom front teeth are hanging in there but look pretty awful and are loose. They've been stuck together so that I can hang onto them a bit longer. Lost a lot of teeth during surgery too so wear a partial metal denture. I don't know why SRS caused this for you. We were warned that radiation for head and neck cancer would affect our production of saliva and hence give rise to rapid dental decay unless a lot of fluoride was used etc. Radiation also affects the blood flow to jaw so it's dangerous to have a tooth extracted in the radiated field without hyperbaric oxygen therapy.
I have not heard of brain tumor patients having this problem - but everyone is different. Hope you can get answers about this.

Hi all,
My extractions were supervised by my head and neck oncologist at University of Maryland Medical Center. They have gone away from Hyperbaric oxygen Therapy and they gave me a long treatment of Vitamin E and a medication that I do not remember the name of right now, to promote blood flow in my jaw. So far, so good.
Elaine, you have to be proactive about your gums. The most important thing is to take care of your mouth very well. I go for cleaning every three months. I use a very good water pick and little brushes between my teeth and I brush every time I eat. Talk to your dentist and have him give you recommendations to control receding gums. I was not told about all the repercussions of radiation, but here I am after five years and happy to be healthy and alive.

Greetings! I second Loli’s advice about being extra diligent about oral care. About 3 months after chemo/radiation treatment for stage iv oropharyngeal cancer, I started to experience ororadionecrosis — dead jawbone was being expelled through my gum tissue. This has continued now for almost 3 years post-treatment. It is imperative I keep the area clean to avoid infection, ie, using a waterpik, flossing, brushing, and nightly fluoride trays. The roots of the back molar are completely exposed, the tooth is loose but holding on. The necrosis is spreading forward but under the tooth line so we think the other teeth may be saved. I am also on a liquid vitamin E regimen and taking pentoxifylline for tissue health and blood flow. The necrosis coupled with dry mouth and swallowing issues is not fun but I am grateful for my treatment and current health status - no evidence of the cancer. Staying close with your dentist and oral surgeon is important through this process.

Very interesting @catlyn. I don't know anyone living with this condition although we are always warned about it. Was hyperparic oxygen mentioned to you? I was told once that pentoxifylline was a substitute.

Hi Maureen, yes, the oral surgeon talked about hyperbaric oxygen and advised against it in my case, he’s not supportive of it as a treatment, we talked about it and (unsolicited) he provided me with a report/study supporting his position that it has no real impact on treating necrosis. My dentist had initially mentioned it but defers to the oral surgeon on treating the necrosis. I’m sure there are differing opinions throughout the medical profession.
When the necrosis began the oncologists said it was an uncommon effect and when presented typically did so 4-5 years after radiation. However, mine began 3 months after. The oral surgeon has at times removed pieces or filed down especially jagged pieces of exposed bone. It actually seems to have slowed.
We’re in watch and manage mode as the gum tissue is healthy and the area has remained free of infection. The gum tissue separates over the dead bone, the bone ultimately sloughs off and the process then repeats. It’s about a 10-14 day cycle and varies from a dull ache & uncomfortable to down right painful. I’m used to it now and am on a pain killer, which makes it tolerable. To support the health of the gum tissue I take 1000 units of liquid vitamin E daily and pentoxifylline 2x daily. Am also taking pilocarpine for the salivary gland issue. I’m extremely diligent about keeping the area (and all my teeth) clean. Where we are now is not a bad thing and the best we can hope for given surgery is out of the question.
As background, I was diagnosed in March 2015, had 35 radiation treatments and 3 rounds of cisplatin. The tumor was at the base of my tongue, right side (that’s where the necrosis is) and had spread to lymph nodes on both sides. The tumor was quite large and the cancer advanced. With about a week of treatment left I hit a wall, unable to eat or drink, was in the hospital for about 2 weeks then resumed and completed treatment in June 2015. Last PET was in Dec 2016 and looked good. Yay!
Recovery has been slow but I’m definitely doing well and grateful for all I have.... family, friends, support network, etc. I retired early (my choice) from a demanding, fast paced corporate position. Sometimes I feel that I am still adjusting to my new normal, however, I’m optimistic by nature and don’t let feeling blue now and then get me down.
I had my last visit with the chemo oncologist in February and continue to see the radiation oncologist and ENT every 6 months.
I’m new to this forum and have enjoyed reading comments from others about their experiences and now sharing my own! ;o)

Hi Catlyn,

We have much in common, though my tumor was much smaller than yours, and in my right cheek. Radiation therapy was just preventive but I received 40 treatments. To start treatment my mouth was very healthy in regards of my gums and teeth. They had to pull out my last down mollar during surgery, to be able to place the flap on my inner cheek. Soon after radiation my gums started to recede. The dentist then found out I had started with osteonecrosis of the jaw. He started me on 1000 vitamins E and Pentoxifylline 2/d. I took it for about 4 years and I think it is something to discuss with my doctor in July. Sorry, something came up. Will come back at it later.

Very interesting. Here in Auckland they talk only of HBO. I'm really glad that the Vitamin E and pentoxifylline are helping to keep your jaw stable. You were unlucky indeed to fall pray to ORN so soon after treatment. I love your attitude - we can't all make peace with cancer like that but it's great to meet people who can. They can help the rest of us!