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)