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URGENT - Panic
HI all H&N members. I had my CT scan last week and I saw my ENT doctor today. He said my CT scan showed their was a "mass" in my larynx. They eliminated my original tumor on the base of my tongue and left tonsil. Now a year and a half later he suspects the cancer came back. Not just because scan said their was a mass but…
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Radiation Effects
Hello, I was diagnosed with Olfactory Neuroblastoma in March 2019, had surgey to remove the large tumor in my right sanal cavity in April and just finished my second of six weeks of radiation to my sinus' and neck (excluding my left saliva gland). During my surgery I had my entire olfactory nerve removed so my sense of…
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eating surprise
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greetings from a new member
hello, I am a 61 year old male, recently diagnosed with stage 4 cancer. in my neck and throat. It is in my lymph nodes and has gotten into my chest area. The prognosis , I have been told is not good. My attitude is " it is what it is"" and to try to have a positive attitdue. I lived in New Mexico when i was initially…
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Another Chapter in my H&N Journey-Stiff Neck-Rad Leftovers
About a month and a half ago a couple of weeks after seeing my ENT I started getting a soreness on the side of my neck, the side that was radiated. When I stretch my neck different ways it feels like a tight muscle. There is some soreness a lot of the time but sometimes it feels normal with no soreness like the other…
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LANREOTIDE & AXITINIB--anyone know about these trials?
Yesterday I saw Dr. Tito Fojo in NYC. He is one of the best Hematologist/Oncologist researchers in the world. My ENT surgeon wanted me to see him before surgery. I told him all about my malignant Carotid Body Tumor. He listened carefully, asked some questions, and then spent the rest of the time talking about two trials he…
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It appears my tongue cancer is back
I just read my PET scan and it says I'm being referred for tongue cancer again. I don't see it or feel it but Ithe scan shows a lesion. I can barely open my mouth which scares the **** out of me as to how they will tackle this. This is truly my worst nightmare coming true.
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Ketogenic Diet - Clinical Trial Thoughts????????
I am 12 weeks post treatment. Been reviewing the "net" on the "anti-cancer" diet I see here and there, and I came across this---a real bonafide clinical trial. The theory is that if you starve your body of carbs, then no glucose, and cancer cells cannot thrive. Ketogenic diet-proteins and fats. See these links:…
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Hypothyroidism
I finished TX June of '12 (6 Cisplatin treatments and 35 rads, 70 Gy total - tumor near epiglottis) My thyroid had started to underperform in 2018 and my old PCP never mentioned it from the lab tests. I changed PCPs recently and my new DO started me with 50mcg Levothyroxin. We will monitor to check for dosage changes. I…
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I'm Back...
I was reading and posting to this forum back in the summer of 2017 with my first cancer. It was an HPV related carcinoma. The radiation therapy was directed to the base of the tongue. I had 33 days of radiation and 3 chemo sessions. I responded well and had been clear until this last June - 2019. During my last checkup the…
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I’m a little over a year out of treatment and still cancer free
Hello everyone I haven’t been on here in sometime. Hope you all are doing well and summer is treating you well? Question I’m a year out of treatment and NED so blessed!! However I still have numbness and very sore the side of my neck dissection and radiation. Is this normal after over a year out of treatment as of June 15?…
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Scar tissue aspiration- any way to avoid feeding tube?
Help! ENT Dr. scoped my throat due to my swallowing test reults. Said he sees a lot of scar tissue, and attributes that to the aspiration. Anybody know of a way to eliminate the scar tissue impediment? Laser, for instance? I had a feeding tube and used exclusively for 10-11 weeks in tx, and kept for 17 months; however, the…
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Waiting for PET
Newly diagnosed HVP+ SCC. I had tonsil stones but it felt different so I elected to have tonsilectomy which revealed the demon. They gave me a loose sketch of what they are thinking until they get PET. if it is negative they want to do TORS and clean up margins and possibly take a few nodes. If it shows other spots, then…
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Centers I had for treatment now in Class Action Suit
Yes I have been on here often asking for help or ranting but after reading a great article by a Onocologist, now a Class Action Suit against the Centers that treated My Cancer I feel strongly, that even 3 yrs NED does Not mean to Me I’m cured & if I knew than what I know now would have done things differentl. Cancer still…
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Olfactory Neuroblastoma
Hello, my name is Heidi. While I myself do not have cancer, my father was recently diagnosed with having an olfactory neuroblastoma last week. I would like to talk with anyone who either is a survivor or knows someone who has been diagnosed with this cancer. I'm daddy's little girl, and this diagnosis has been really…
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Difficulty breathing and pain
Hi H&N members. I had a few questions and I'm hoping that someone can help me. I had base of the tongue and left tonsil cancer. Been over year since treatments finished. I have ear pain and my primary care doctor said it was an ear infection but my throat doctor said I don't have an infection. He scoped me and said I have…
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Holding my breath
Here we go again! I am 18 months post treatment, 35 rads and 2 chemo for tonsil SCC HPV+16. Doing OK in the grand scheme of things. My husband is now facing the demon. He detected a lump in his throat in Dec. CT scan, inconclusive..same with MRI. Will have his tonsils removed next month. That biopsy will hopefully, tell a…
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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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Radiation Olfactory Neuroblastoma
I am hoping to get some information on radiation theropy. My doctors have been very back and forth on whether or not I need radiation. I have a grade 2 tumour that was removed in April, my margins are all negative and it did not reach my brain. I have not had a PET scan, my dctors say it is not necessary. At my most recent…
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Dead Bone in Jaw
I went to my ent specialist with swelling and pain on the inside of my mouth at the bottom along the jaw bone. Through a hole in the inside skin he could see what he called a 'dead bone' from the radiation (which I finished my 30 treatments at the end of April). He has given me antibiotics for an infection there and said…
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It is with Deep Sadness
that i let you all know that my mom passed away on Friday, May 17th. She was doing quite well, considering she chose to forgo treatment back in September when she was diagnosed. A week ago, we were all at her apartment eating "Mother's Day" cake - and even mom was able to eat it. (She had some issues with getting certain…
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One year NED!
I really didn't expect any different, although the only reason for that would be because I feel great. But I answered all of the standard questions positively, and all of the visual and physical exams had nothing but rave reviews, so I feel pretty good about everything. I still have some neuropathy, but as long as I'm…
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Selective Neck Dissection
Has anyone had a selective neck dissection...it would appear that it may be a possibility for me in the near future. Any insight would be appreciated.... Jon
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Salivary Gland Transfer...
Have any of you heard of this or discussed this with your doctor at some point? I was talking to someone earlier this week that had relatively the same cancer diagnosis as myself, Stage 3 SCC BOT HPV+ with some lymph node involvement. His was three years ago. He said they did a SGT (submandibular gland transfer) before his…
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Agent Orange Cancer
Trying to find additional data and research papers and Doctors who support belief that throat and tongue cancer is part of the respirTory tract not the digestive tract to support my claim for compension
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Will radiation and chemo be a part of my treatment can I forgo that part?
I am 57 year old female diagnosed with stage 1 tongue cancer base of tongue on left hand side. I am writing to ask they are doing a partial or glossectomy they said with a thigh graft and then neck dissection - will i have to have radiation or chemo treatments after surgery? Or can I be spared of that and forgo the…
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Another positive story
SCC, right tonsil and lymph node, large 3cm+, stage IVb, 35 radiation doses and seven Cisplatin infusions stopped after five doses. Friday (yesterday) I went through a PET scan again. This is the one closest to two and a half years after diagnosis for me. I was all clear. No metastasis anywhere to be seen. NED But I'm not…
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Doctor says Sinus CT Scan. Scared...
Hi guys I am a 32 years old male. About 10 days ago I woke up and felt pain on the right side of my face and head. There was itching down in my throat when swallowing saliva. And one of my lymph node under the right jaw was enlarged and had tenderness. I went to see the primary care doctor and was told I was fine. He…
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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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Post radiation rotator cuff tear
Hello everyone. I'm new to this forum and looking to gain more info on long term side effects of chemo/radiation. Finished chemo/radiation for tonsil cancer in April 2017. I have had a lot of setbacks during recovery, as I'm sure a lot of you have. The latest is a rotator cuff tear in my left shoulder. Saw a very well…