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Superthread (Read only) ~ contributed by Sweetblood22
Welcome new members! This is a read-only post that provides information about resources we, members of the head and neck cancer forum, found helpful as well as our answers to most frequently asked questions in our forum. Please feel free to send Skiffin16 a private message (PM) if you have something you think should be…
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Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
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TORS, radiation, and chemo—choices
TORS+ vs Radiation/Chemo I’ve been diagnosed with p16 (HPV)-positive oropharynx cancer, stage one (cT2N1M0 p16). I have one positive lymph node infected, a likely second positive node, and a questionable third node—all on the same side as my tumor which is at the base of my tongue. One option is the TORS route. I would…
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I'm part of a clinical trial
I feel I am a lucky person to have been approved to participate in a clinical trial for a less damaging radiation treatment. I had been seeking treatment with protons for that same "less damaging" reason, but due to various factors, getting insurance approval was simply taking too long. I start Tuesday. Involved Field…
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After TORS, de-intensified trial of 3 weeks rad
Hi all. Massive thanks to you who have shared your experience and helpful tips about getting through your ordeals. You have shown me what patience and strength is. I'm here for support, but also want to be a resource for anyone going through something similar, as I seem to be a kinda niche patient with this early-stage ssc…
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Beginning therapy and scared
About 11 weeks ago my spouse noticed a lump on his neck and we went to the dr and were prescribed antibiotic treatment for an "angry lymph node" .... fast forward 3 weeks when we went to the emergency room when it did not reduce in size. He has stage 3 HNSCC as well as laryngeal cancer and esophageal cancer. We just did…
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Salt & Soda Solution for Secretions
I came across the "recipe" I was given for salt and soda solution to help control secretions. Thought it may be helpful to share. :) Into 1 quart water add: 1/2 teaspoon table salt 1/2 teaspoon baking soda Shake or stir solution. Store at room temperature. Use every 1-3 hours - especially after eating, taking oral…
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Photodynamic Laser Treatment for Osteoradionecrosis?
Please members make note of this, it may be helpful someday to you. Although not the frontline treatment on this a fellow CSN'er, Mavish, recently posted this as an add-on and update into another posting. I think this subject and this option is important enough to share as a posting to the group and the public at large.…
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Buccal mucosal squamous cell carcinoma
Hello there! I am a 51 year old woman who was recently diagnosed with squamous cell carcinoma right buccal mucosa. Started with what I thought was a cheek bite in Decemeber. It would not heal properly, and in January at my normal dentist appointment he was concerned and sent me on for a biopsy. Got the call Feb 6th that…
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52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
I’m in the club no-one wants to be in as a newly diagnosed cancer patient. I’m a former smoker who quit daily 1/2 pack a day habit 19 years ago but still smoked socially up until diagnosis about 4-5 packs a year. Otherwise healthy and on no medications. My details are a mildly painful mass in my left neck just under…
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Osteoradionecrosis treatment with pentoxyphiline, clodronate, prednisolone and Vitamin E treatmene,
Hi all, I wonder if anyone tried above meds for in combination for Orn treatment? If so what was their condition before and after the treatment. I have ORN since 2018, following head and neck RT for tonsils cancer. Chris
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Sore throat still
I know there is no "normal" when it comes to cancer...but...does it seem right, to still have a sore throat after 3 months out of treatment? I do have an appt. for my first MRI on Feb.4. I am anxious, nervous, scared and all the rest:) It's not sore all of the time, and there is no rhyme or reason for when it is sore. Is…
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Wishing Everyone On CSN H&N A Happy And Wonderful 2026 New Year
Wishing everyone a Happy Happy New Year and Most Definitely a Cancer-Free Life from here on out. And my prayers are for everyone on here that you all get through any cancer situations you are in, and that this Evil Disease will never darken your door again. Feel free to comment and share greetings, stories, information,…
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Carotid body tumors need help finding specialist!
My husband is 40 years old and doctors just found 2 carotid body tumors on a ct scan, one on right side of neck and one on the left. Surgeon that requested ct scan told us today to do our research and get him to a specialist in these tumors as he is not and doesn’t know anyone around here that is. We are south of Buffalo…
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Christmas Blessings To Our Group In The CSN H&N Section 2025
I Am Wishing Everyone A Blessed And Joyous Christmas And Great Hope ForTomorrowPlease feel free to add your Christmas greetings and Well Wishes, everyone. It is once again Christmas and time for family gatherings, food, gifting others, and extending goodwill to all. This is certainly a wonderful time of the year that can…
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Immunotherapy for Squamous Cell Carcinoma, base of tongue
Brief recap: 2007, SCC left tonsil/lymph gland, minor surgery, 35 rads, 7 Cisplatin Chemo, still all clear last PET 3/2025. 2022, SCC right tonsil, TORS for tumor, RND of the neck. No chemo, 30 rads. PET 2025 shows reoccurrence near base of tongue. Surgery and radiation not an option. Waiting on appt to discuss…
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Side effects of radiation and chemo for treatment of NECK cancer.
Hey all. I am new to this forum, but I have questions. I am 7 weeks post radiation and chemo treatments for HVP small cell squama's carcinoma. I knew most of the side effects going into my treatment plan. They all sucked but I knew. I lost my taste after week 2. Needed a feeding PEG tube after week 5. The horror show had…
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Perineural Spread?
Hi all, I am wondering if anyone has had experience with perineural spread? My fiance had two good scans January and April of this year following surgery, radiation, and chemo for SCC base of tongue. Post-surgery and in the radiation planning process there still appeared to be spread along V3 nerve. January MRI and PET/CT…
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Awake Trach Procedure - Quite An Experience - Experiencing A New Phase Of H&N
I am writing to give you an update on my health situation. I have been having difficulty breathing on and off now for several months or more. I was usually better as the day went on, and in the evening till I went to bed, I was breathing fine. But in the morning, when I woke up, breathing was difficult. Finally on Monday…
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Dental -update
Oncologist gave us a dental surgeon's name to get teeth extrated since they are crumbling. Called insurtance company and said the cover 100 percent and to file under medical. Insurance person at dental surgeon's office said they do not file medical, only dental. I called a regular dentist listed on the insurance network.…
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Nutrition after tooth extraction, several years post radiation for BOT Cancer.
I need to have a tooth pulled and a root canal on another tooth (RC shouldn’t matter). Since my radiation, which was four years ago, my main nutrition comes from 2 large smoothies, 4 total servings daily. Now I’m reading that after extraction I should avoid using straws, and avoid seeds. One of my smoothies has blueberries…
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Wishing A Happy And Blessed 2025 Thanksgiving To Everyone
For each new morning with its light, For rest and shelter of the night, For health and food, for love and friends, For everything Thy goodness sends. ~Ralph Waldo Emerson Wishing Everyone A Happy Thanksgiving 2024 Hello everyone on the CSN H&N discussion board. Wishing everyone a Happy Thanksgiving. Inviting everyone to…
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Dental problems after radiation, 2nd time
I had hodgkin disease 22 years ago, and again one year later, then in 2008 I was diagnosed with a malignant tonsil. Radiation again. My teeth were fixed several times through all this, but the radiation has destroyed them this time. They are brittle, breaking, decaying and just falling apart. I have had 5 pulled so far. I…
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My biggest fear...
My biggest concern is for my pets. I share my life with an Australian Blue Heeler and a Tuxedo Cat, both around seven years old. We live alone in an RV, and since I rarely have visitors, I’m the only one who looks after them. If—or rather, when—my time comes, I worry I won’t have the chance to alert anyone to collect them.…
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Vagal Nerve Damage from Radiation
Hi folks - it's been a long time. My husband had tonsil cancer over a decade ago and got the full chemo and rad treatment. I was active here for a while, but after a few years, I saw that others could provide any info I could, and it was hard to relive the bad days. Now, I'm learning about something that might be new to…
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possible aspiration???
I am a year out from stage 3 Throat . Starting in Nov I was getting more hoarse and feel like lungs are inflamed or have some liquid hard to define. Since radiation I have had two swallow studies and they both show some dysphagia. Feels like food just stops on the left side same place all the time and then disappears on…
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Happy Mothers Day Celebration And Blessings to Everyone
I would like to wish everyone a Wonderful and Blessed Mother's Day. Enjoy this day and celebrate mothers everywhere because we all have one, everybody does. Go visit, send cards, or phone Mom and tell her how much she means to you and how much you love her. And for those of us whose mom has passed on, bask in the memories…
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Recommendations for Dentists with Head & Neck Cancer experience
Hi, I’m looking for a good Dentist with Head & Neck Cancer experience in the Houston, TX area. I was diagnosed with Squamous Cell Carcinoma of the oral tongue in 2012. I received a left partial glossectomy and bilateral neck dissections with left forearm free flap reconstruction and Radiation therapy. I was doing well…
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Parotid gland cancer
I’m 54 year old male. First diagnosed in 2024 Had the tumor removed, decided no radiation. It can back this year, had surgery in September. A full parotidectomy and 6 lymph nodes that it spread too. My doctor said i need radiation this time. Can someone please tell me how the radiation is, the side effects are a lot.
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Guided Missiles Targeting Tumor Cells - Cancer Breakthrough Research - OCT 27, 2025
European research has come up with a promising new cancer-fighting concept that targets a kind of antenna on the surface of the tumor cells. I believe mostly used in breast cancer for now. I believe it is slated to be tried in other cancers also. It seems there are many researchers all around the world working for answers…
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Possible cancer recurrence
I was treated for stage 3 tonsillar cancer in 2014. I had radiation for six weeks and have been cancer-free since. I recently noticed sudden weight loss, so I went to my regular doctor and he scheduled me for 3 CT scans with contrast from head and neck down to the pelvis. I feel confident that if cancer, it would be in the…