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Good days...
Today is a good day and I'm hoping that we all have many good days ahead. I am so appreciative that I have found this board and have gotten so many positive, helpful responses with great ideas and tips to help me along the way. I know that my care team will assist me with medical advice and be assuring in my treatment.…
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I'm new to this site and wanted to introduce myself
I'm a 56 year old wife and mom to 1 son and 2 fur babies. I am from small town Midwest USA. I was a caregiver to a family member for 9 years before he passed and now I am the one needing care. I was diagnosed in June of 2022 with squamous cell carcinoma of the head and neck. I recently had a second biopsy to confirm the…
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Eating
I do not want to eat. I watch food shows but doesn’t help. Has anyone else faced this. I am again losing weight
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Taste change.
Hello. I’m new here. About 1/2 way through chemo/radiation for Oropharyngeal Squamous Cell Carcinoma. AKA, tonsil cancer. Recently had the tastebud “change”. Everything taste super nasty right now. So far I’ve only lost 1 pound but this feels like a game changer. Two or three bites and I gotta stop. Super discussing. I’ve…
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Prescriptions for Insomnia
I am currently using Edular (Zolpidem Tartrate) 10mg sublingual tablets to help me sleep. They do help me get a little sleep (doze), but the side effects (groggy/drowsy/no energy) limit my ability to be active during the day. I would like to know if anyone else has been prescribed another drug that is sublingual for…
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Longer term questions - gums, voice, thyroid
Hi All! First of all, am I crazy or did this forum used to be divided into different sections like "long term issues," "care givers," "eating," etc.? I was looking for those sections but can't find them, so if I have posted this in the wrong place, please let me know. To the questions: I am 4 years out now from the end of…
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Has anyone had gum bone replacement?
Hi All, I have lost my gum bone or my left face has a hole since they removed my gum bone, tonsil, and my mouth turned out small (less than an inch opening). This is due to my 2nd tumor in my nose in 2019 after the first one in my throat in 2014. I had two times radiation and chemo treatments 2014 and 2019. Now, my left…
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Post Tx B12 & Testosterone Monthly Injections -- WHY??
Of course, I will need to review with my oncologist, but I thought I would ask around here anyway. My tx ended March of 2021. Doc says I will need these monthly B12 and testosterone injections "for life". Has anyone else dealt with this? I am wondering why these are needed. I am very active (walk 3 miles/day and bicycle 30…
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Switching tube feeds
Hello everyone, Newbie here, currently in hospital. I am about to be released from hospital to go home for two weeks before starting chemo/radiation. I have gotten a G tube, currently on Pivot 1.5. They are switching me to Jevity 1.5 to go home unless I can’t tolerate it. Anyone know why they would switch formulas just…
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Dysphagia Exercises?
Hello I'm a 15 year survivor of NPC (Diagnosed when I was 14) I was unable to eat and swallow food for almost a year afterwards and ever since its been hard for me to swallow food. I have to take a drink after almost every bite of food to get it to go down. I plan on bringing it up again at my upcoming appointment, but…
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H&N Related Inspiring Woman and Related Trach & Ventilator Informational Videos
Hello all you H&N folks. I hope everyone is doing the best they possibly can. I was helping a friend search for information on trachs the other day when I ran into a young woman who has had perplexing illnesses and has now ended up using a trach and ventilator. Her enthusiasm and bright spirit are uplifting despite the…
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Hello
I was recently diagnosed with tongue cancer and surgery has been recommended which I want to opt-out of . Is there anyone else here who refused surgery of the tongue and just did radiation instead?
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24/7 taste of burnt metal in mouth after radiation
I quit treatment after 21 sessions and was told taste would return in about 2 weeks. It's almost 5 and though I can taste a bit, I have this terrible taste in my mouth all the time and it seriously taints anything. My tongue feels pickled and dry and mouth very sensitive and dry. Has anyone else had this constant bad taste…
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Red
Hello everyone, I've been diagnosed with stage 3 nasopharynx now just over 2 years. I'm now stage 4....
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Medical Bill Assistance?
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Wishing Everyone A Happy 4TH of July
As we go forward into and following this July 4th holiday may we value and cherish the blessings we have in this country and as we celebrate our independence, the joy of freedom and God-given rights and blessings may we always remember the sacrifices of past generations and our founding fathers and live in light of that…
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Recovery time
My husband just finished his 6 week course of Cisplatin and radiation on Monday June 27th. I was just wondering how long it took others to begin to feel better? He has very little energy, isn't eating or drinking due to everything tasting like salt. All of his nutrition and hydration is through a PEG tube currently. He…
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Persistent throat irritation nearly 5 years out
Hey all - been a while since I posted here mostly because things are going pretty well, I'm nearly 5 years out from my surgery (Dec 2017) and subsequent radiation... but over the past few months I've been dealing with a mild but persistent throat irritation on the right side, same side as the HIV base of tongue tumor had…
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Not eating or drinking due to stomach pain
Hello! First post on behalf of my husband. He was diagnosed with Stage 4 throat cancer on the base of his tongue back in March. He had 3 chemotherapy sessions and 35 radiation treatments. No surgery. The last one was about a week ago and the last chemo session 2 weeks ago.He never had a feeding tube and up until last week…
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Greetings from New Member
Hello All ! My name is Adrianna I am semi-new to this club. After years of voice fatigue, voice hoarseness and being followed by an ENT at one of my follow-up visits he saw a lesion on my rt vocal cord on January 25, 2022. I was scheduled for surgery on Feb 9th and based on the first/final pathology I was diagnosed on Feb.…
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Low white blood cell count
Hello everyone. My husband was diagnosed with tonsillar cancer with lymph node involvement in April. He had TORS surgery and a radical neck dissection, where they removed 44 lymph nodes, four of which were positive and one of those had extranodal extension of the cancer. He was prescribed 6 weeks of Cisplatin and 32…
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Esophageal wall thickening
Hello I'm new to this thread I'm 43 years old a woman my name is Misty. 3 years ago I was having issues swallowing long story short they did an endoscopy and it showed some papillomas that he biopsied he told me they were non-cancerous and never really mentioned that I should follow up or anything being so young and busy…
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Head & Neck Cancer Survivorship And Symposium (HNCA) Register Now
Hello folks. Don't miss this opportunity. Medical information from top medical people. Here is information and links that you can access a webinar run by HNCA (Head and Neck Cancer Alliance) HNCA and the American Head and Neck Society (AHNS) are pleased to announce the 2022 Virtual Head and Neck Cancer Survivorship…
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Nausea with radiation
Did anyone else get nauseous during radiation??? I've been super nauseous lately. It's gross -_-. I looked in the symptoms part of the superthread, but didn't see nausea listed.
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Hello, new member
Hello, I just joined this. I had oral cancer in 2015, a tumor on the right side of my tongue that was cancerous and spread to the lymph nodes on the same side of the neck. Went thru 6.5 weeks of radiation and 3 treatments of chemo. I had part of my tongue removed and replaced with a chunk from wrist area. I also had a neck…
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Hello all
It was late Nov the last time I strolled through here, just after my 3 1/2 year checkup. Last month, on May 19 (my birthday), I had my 4 year checkup and all is well. I saw my ENT and as nurse practitioner on this visit, and I'll just see a couple nurse practitioners in Nov. I've been a little confused as to how long the 6…
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Hondo
This is Hondo's daughter, I wanted to let everyone know that he passed away Monday. He has been struggling with pnemonia from aspirations since August. He was hospitalized about a month ago and since then was just unable to bounce back. I know you all meant so much to him and gave him so much support and uplifting during…
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Research and experience on reducing side-effects from platinum-based chemo/radiation
In October of 2021, I underwent TORS (left side) w/ a left-side neck dissection.. followed by 30 treatments of radiation (proton - both sides), and seven weekly chemo infusions (cisplatin). I did two things you might want to research to reduce side effects: 1. fasting during chemo infusion; and 2. daily red-light therapy…
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Confusing results
I had a pet scan on the 8th June which showed a spot on one of my lungs. My oncologist ordered a ct scan for the 17th June so a "work up could be performed" . The spot that was on the pet scan had disappeared on the ct scan.........but the ct scan showed there was another spot beneath the original that was 4.9 mils . The…
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getting off the peg tube
hello everyone, I need help! I have finished treatment now 6 weeks 30 radiation sessions for tongue base cancer and am doing well I am told, but I am having a heck of a time getting back to eating. I can swallow and some foods are going down, but it seems like it is all trial and error. It is too easy to use the Peg tube.…