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Nov 29, 2018 · Oesophageal tumour in Head & Neck Cancer

Dear @nowayback, I have been following this thread since your first message and think about you daily. Regrettably I am unable to offer constructive advice or guidance to help you navigate this difficult path, however, I hope in some small way it helps to know there are folks out here who are thinking about you and wishing you continued strength and optimism.

Nov 18, 2018 · HPV Throat Cancer in Head & Neck Cancer

@lynalexa, how distressing that the cancer has returned, I am so sorry that this difficult part of the journey continues.
Sending positive thoughts of strength and support.

Oct 19, 2018 · Phantom Smell in Head & Neck Cancer

Hi, has anyone who has been treated with radiation therapy for head or neck cancer experienced phantosmia, or smelling something that is not there? For about the last 2 months I’ve smelled a musty kind of burnt smell off and on throughout the day – sometimes for only a few minutes other times for several hours. I’ve not lost my regular sense of smell. My last radiation treatment was in June 2015. My radiation oncologist has referred me to a neurologist who says it could be nothing and go away on its own (or not), or may be something more serious, eg, polyps, nerve damage, brain tumor. I’m scheduled for an EEG and MRI and hope to learn more after those tests. In the meantime I’m curious if anyone else has experienced olfactory hallucinations. Thank you.

Sep 30, 2018 · HPV Throat Cancer in Head & Neck Cancer

Thank you, @alpaca, your kindness is appreciated (and hello from Michigan!). It seems there is so much still to learn about HPV positive head and neck cancer and its potential for recurrence.

Sep 30, 2018 · HPV Throat Cancer in Head & Neck Cancer

Hi @fxdwing, I’m so sorry to hear about your current health concerns. I was treated for stage IV HPV oropharyngeal cancer in 2015. The tumor was on the right side base of tongue and had spread to the lymph nodes on both sides. I too underwent 35 radiation treatments and 3 rounds of chemo (cisplatin). My last treatment was in June 2015. I am living with the long term effects of the radiation- jaw bone necrosis, dry mouth, some difficulty swallowing, and my voice has not quite returned to normal. I’m keeping you in my thoughts and prayers and hoping for the best possible outcome for you.

Apr 24, 2018 · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

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)

Apr 23, 2018 · Meet others living with Head & Neck Cancer - Come introduce yourself in Head & Neck Cancer

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.