Head and Neck Cancer
Discussion List
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10 year survivor
Hey folks, I'm hoping long time members of this board as well as others that may know long time H&N survivors can share a brief status on how they are doing. It's always encouraging to hear stories from those who fought the battle and are flourishing. So, if you could please include: initial diagnosis and date. treatment…
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"First bite syndrome" - oh it hurts!
Hey All, I had head/neck cancer diagnosis in June 2018, finished treatment in Sept 2018 (2 rounds of chemo + 42 days IMRT radiation). The treatment was pretty rough but now I'm 7 months post-treatment and each day is a little different, mostly in the positive direction. Before treatment, occasionally I'd experience "first…
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sore on lower gum in rear not healing
Hi, I am 2.5 months post 1 mega dose cisplatin and 39 rads I started last week with pain in left jaw and called ent he said no worries PET scan is on May 14th and he is confident I’m doing well might be stress pain or grinding . So the last few days pain got worse I thought maybe I had a abcess called Dentist and she…
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Pet scan
Finished up 37 rounds of radiation, and 7 rounds of chemo, for head a d neck cancer.last treatment was in January for squamous cell carcinoma. Diagonished positive in left limp node on neck, and pet scan kit lite up in 2 spots in throat. Tonsil area, and base of tongue. Biopsy of throat area was negative. Now 3 months…
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Early gum disease pre-chemo/rad: best to extract some or all teeth?
This is my first post. Thank you in advance for taking the time to read this. My 54-year-old SO has base of tongue HPV+ cancer and an affected lymph node on the right side of the neck. Need to decide how many teeth to extract. Yesterday was his oral surgery consult. He has early gum disease and a mouth full of fillings. A…
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Patients who work out fare better!
That's what I was told by my docs/nurses, so I have embarked on a fitness quest and am on the hook for at least 16 sessions with a fitness class progam called "Orange Theory". Oh my! What did I get myself into! So I partook in a free 1-hour session last Wed and lived to tell about it. I was in a small class where most of…
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Two year anniversary - and I'm still Here
The C: Section Chronicles - Two Year Anniversary Even though my treatment actually finished on the 21st April 2017, Today, Friday, is more relevant to me as Friday was the day I finished my 30th radiation treatment, and it began the slow process of healing. The first few months post treatment was harrowing to say the…
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How do you guys pay for it all
16 months post BOT SCC surgery and then 30 rads last February-March; I hit my out-of-pocket max ($5,900) each of the past two years and now it looks like I'm heading that way for the third year in a row. Just had a CT scan that's likely to set me back $1k, ordered by my radonc, whose appointment/endoscopy cost me nearly…
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Side effects of Fluorouracil (5FU) for NPC Nasopharyngeal Cancer
I was diagnosed with Nasopharyngeal Cancer back around the 1st of the year (2019). I have finished my radiation treatment, along with 3 rounds of Cisplatin chemo. At this point, I am scheduled for 3 more follow up treatments of Chemo - Fluorouracil (5FU) along with Cisplatin. This will be slow released, via a "ball" over a…
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Biotene vs Salivea
My husband recently discovered Salivea mouthwash and mouth spray for his dry mouth. They also make a toothpaste. Laclede, the company that originally developed Biotene, sold Biotene to GSK in 2008. GSK changed the formula and many people at the time said the new formula wasn’t as effective. The non-compete expired in 2018…
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Copd
Completed radiation Oct 1 2018 for vocal cord cancer. Stage T1 Still very fatigued..lots of mucus..coughing and very dry Now dr says I have the beginning of COPD. I'm finding I'm using the rescue inhaler more often. Has anyone else had this problem after radiation. I'm 71 yrs old and also an 18 yr survivor of stage 3…
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Copd
Completed radiation Oct 1 2018 for vocal cord cancer. Stage T1 Still very fatigued..lots of mucus..coughing and very dry Now dr says I have the beginning of COPD. I'm finding I'm using the rescue inhaler more often. Has anyone else had this problem after radiation. I'm 71 yrs old and also an 18 yr survivor of stage 3…
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dysphagia
10 years ago I had chemo and rads for larynx cancer, I have slowly been losing swallowing ability. Had a surgical procedure late November, swallowing was almost impossible after surgery, had to have a peg tube put in, I becysphagiame severely dehydrated and developed dysphagia. Doc says it's due to the rads. Getting…
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Soft or Easy to Swallow Foods
Hey everyone, i'm writing on behalf of my mom. She's having more and more difficulty with eating/swallowing foods. It's gotta be pretty small/chopped up/etc. in order to get it down, and even then, she tends to cough up quite a bit. She's had pudding, yogurt, ice cream, soups, eggs, and cream of wheat so much that she's…
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This may be it
Posted the other day that I felt some saliva was coming. Well it is happening slowly , post radiation 20 months.I hung in there as many of you advised. Thank you for the inspiration. As long as you are alive there is a chance even if it takes longer than most survivors. I am also getting very small taste and hope more is…
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Tooth Extraction Follow Up
I went for my 2 weeks follow up on Wed. April 3 to the oral surgeon since my tooth extraction. The good news is the doctor says it is healing as well as someone who has not had any radiation and I will not be needing any HBOT to follow up treatments. This is an extra blessing because it means I most likely will be OK with…
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9 month follow-up complete
My 9 month post date technically was March 18, but today was the first day I could see all the docs/nurse practitioners on the same day. Anyway, NED all the way, and everything looks great! All healed up inside and out and no issues whatsoever. My edema is less than the double chin most guys at my weight are sporting and…
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metastasized to thyroid?
Hoooohh-kay... deep breath here... Over the past week the way my neck feels has changed pretty significantly, at first I thought it was my lymphedema but I'm beginning to think it's possible my HPV BOT cancer (surgery/dissection 12/2018, 30 rads, took 57 lymph nodes/1 was involved) metastasized to my thyroid. No swelling…
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Jaw Cancer Journey: Surgery, Rads, Chemo, & More
2019 was off to a challenging start. My mother, who is 62 and lives in Europe, was very suddenly diagnosed with aggressive and advanced squamous cell carcinoma (SCC) of the lower left mandible with spread to lymph nodes (PT4PN3B in cancer lingo). One day, we are celebrating New Year's Day in Florida, the next week we are…
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Unpredictable
20 months post neck radiation ,2 chemos and 45 days of radiation. Still no taste but some saliva coming back slowly. Can chew most foods and swallow. I wanted to give up but I just didn't. Lost 40 pounds and still do not want to eat.Certain soft foods I can tolerate with liquid to wash down. Lost most of my hearing, aids…