Meet others living with Head & Neck Cancer: Introduce yourself

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.

Hi, I also keep close to my dentist. I am doing everything he tells me and he is doing everything he can to help me to have healthy teeth and gums.

Any tips you could share here?

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!

Many of you have met volunteer Mentor, Maureen @alpaca. Today she was featured as our Member in the Spotlight. Enjoy getting to know more about Maureen here:

Who Can Resist Ice Cream With Chocolate on Top: Meet @alpaca https://connect.mayoclinic.org/newsfeed-post/who-can-resist-ice-cream-with-chocolate-on-top-meet-alpaca/

Good Evening all. I am in the process of fighting my second cancer at the age of 45. I beat breast cancer in 2014 but somehow ended up with a fairly rare cancer - Olfactory Neuroblastoma in April 2018. My ENT did surgery March 2018 thinking he was simply removing a nasal polyp. They called me in April 2018 letting me know that I was at a Stage B (2) and needed to be seen. I live in Kansas City but decided to go straight to the Mayo Clinic because of their reputation. I flew to Jacksonville for consultations with my new team of doctors. They had me scheduled and ready to move forward with our treatment plan 2 weeks later. They were able to get clear margins and my pathology report came back clean, but I will start Proton radiation therapy next Monday at the Mayo in Rochester as a precaution. I was in Minnesota last week for my simulation. I've been told that the Proton therapy is easier on your body. I will have some side effects but not as bad as if I was using a different type of radiation. I'm having some anxiety about starting radiation. I was ok until they clamped my head to the table while in the mask. That was the strangest feeling ever. I'm concerned about the nasal congestion and mouth sores and dry mouth. I'm on the waiting list for the lodge but will be staying at one of the Marriotts near the Clinic. I did a tour of part of the lodge but couldn't see my sleeping area so I am a little antsy right now. My main concern was where I would sleep and bathe but they were only able to show pictures. So I have a few questions..... anyone experiencing/ed Olfactory Neuroblastoma? My radiation will be to my nasal area. Anyone have that area treated before? If so, what were your side effects like? Anyone staying/ed at the Lodge in Rochester? If so, what was it like? Thank you for your input and I wish everyone well during their treatments. ~Trina