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ROLLCALL 2016- UPDATED OCTOBER 25, 2016"CLOSED"
ROLL CALL 2016 Updated October 25, 2016 All H&N members are welcome! Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014). Thank You. First off, please feel free to Enroll…
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New to the group!
Nov 18, 2016 - 4:16 pm Orburator during chemo and radiation hi everyone, I'm new here but have been trying to do research about how likely it will be that I can wear my orburator during the time frame I'm having the dual chemo and radiation over the next few months. I had my surgery about a month ago and obviously like…
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Great news today!
My husband has his 4th set of scans on Monday (his 42nd birthday!) since finishing treatment for stage 1 tongue cancer back in January. We got the results today, and NED again! His ENT wants to see him back in February, but we aren't going to scan again until next summer! He said the risk of more radiation from more scans…
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Warm place to spend winter
G’day too all of you, well it looks like old man Winter is on his way to Louisiana early as Monday will be around 49 degrees here in Lafayette. Is there anyone here who lives down in Miami Florida or Brownsville Texas that has an extra room in their home. I am not sure what I will do this winter as I cannot stand the cold…
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3 month check up - good news - I think??
Went in for my three month PET today and all my docs were thrilled. The tumor at the back of my throat is gone and two of the lymph nodes aren't showing any evidence of disease, either. There is one node (that I didn't know was affected) that has shrunk quite a bit, but only showing a partial treatment response. There was…
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Interesting Article in Washington Post
Interesting information for new comers https://www.washingtonpost.com/national/health-science/shavi
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Chefdaddy ?
Hondo Have you heard from or talked to Mike lately. Just wondering Dave
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Finished week #3 on Friday. Tastebuds about 95% gone.
It started happening on Friday, but not badly. By Saturday afternoon, the tastebuds were pretty much gone. I knew it was going to happen, but it still took me aback. I can smell things, but I can't taste them. The only thing I can taste slightly is my coffee in the morning. I use agave nectar as a sweetner, and I can still…
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Jaw Pain
Has anyone experienced jaw and ear pain post treatments? I had stage 4 tonsil cancer with chemo and radiation as the treatment. Last treatment was April 5. This pain develvoped several months ago in my ear area and jaw. It is a radiating, throbbing type of pain with constant pain to the touch on the outside of my jaw. The…
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3 month post PET inconclusive / biopsy conclusive
For those of you who know my story, radiation and chemo treatments for Stage IV tonsil cancer ended on 7/15/16. My 3 month post treatment PET was performed on 10/14/16. The results showed a 4.6 SUV in an area where part of my tongue was removed. The docs could not conclusively determine whether this was radiated tissue or…
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I hate to complain
But the fatigue is overwhelming at times. I'll be four months post radiation on the 12th, and thought by now the fatigue wouldn't be as bad. I do exercise (walk 3 miles) or go to the gym about 5 days per week to see if it would help. I get a bit of a burst of energy after exercising, and then the plunge into a suffocating…
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Throat went south fast! Almost everything I try to eat burns ...
Overall still feeling good, but in the last 5 days, my throat has gone from tolerable with no meds, to needing some Advil, to the magic mouthwash, and now I tried my first meal with Oxy/MM, and almost everything still burns. The senstive spot is the very back of my throat which is hard to target with the MM. A little worse…
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Insomnia
I am almost 2 months post surgery and I am having a very difficult time sleeping at night. I have prescription sleeping pills, they work but, I find myself waking up 30 minutes -1 hour later. I can be exhausted when I go to sleep. The same thing happens. Either wake up or have insomnia. Can anyone make a suggestion? i was…
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Three months out - hoarse and pressure on windpipe
I'm my husband John's caretaker and haven't posted in awhile. He was diagnosed with HPV+ oropharyngeal cancer in May. Primary tumor in lingual tonsil at BOT and one lymph node on side of neck 4cm. He had 35 proton therapy sessions at Scripps with 7 concurrent cisplatin. No PEG. Lost 30 pounds. Has regained some appetite…
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Question for olfactory neuroblastoma folks
Hi I would like to get a second opinion for my treatment of ONB and wondered the name of the doctor and the hospital that you were treated at. I called my health insurance company and they said they needed the name of the doctor to see if it would be covered. Also, do you seek a head and neck specialist or a neurosurgeon…
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2 months post radiation return of major pain
Good evening everyone, My husband is 2 months post radiation. After his pain went away at about 3 weeks after treatment, he was totally pain free for 4 weeks, didn't even have to take a tylenol or advil. Last week, he started having major pain again, unlike treatment pain. This is near the surgery area. More muscular or…
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Newbie
Hi everyone! I'm Shannon from the Tampa area. I was diagnosed with SCC, lateral tongue, on Wednesday. I haven't had scans or been staged yet. It is all so new. My consultation at Moffitt is Nov. 9th. Until then, I am trying to read as much as I can. I have a fabulous support system. My boyfriend and Mom are going to be…
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What can I expect this time?
Some of you know my story. I am really worried about second round rads with chemo. Especially when I will be alone in a hotel for a number of weeks. I had rads over the summer without chemo and it was pretty debilitating. Can I do this alone? I know the answer is subjective but I want to know what to expect.
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New to site vocal cord cancer and partial laryngectomy Help
New to site Have many questions Help My husband was diagnosed 8 yrs ago with left vocal cord cancer he had 8 weeks of Radiation and 6 weeks of Chemo. He faithfully followe up with his ENT all of those years and was considered cured. About a year ago his voice start going out on him we thought it might be his job he's…
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WILL I EVER EAT AGAIN????
I have been reading so much on this wonderful website. I have been out of 8 weeks of radiation and 3 sessions of chemo for about 1 and 1/2 months now. I am so impatient and want to eat real food again. Does it really take a long time? I was treated for naso-phar. cancer. Right now I am living off of Ensure,water, and just…
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Drinks that help with dry mouth (xerostomia)
I'm wondering if it would be useful to create a list of drinks that those of us with Xerostomia have found helpful? It becomes quickly and disappointingly clear that water is next to useless! Artificial saliva isn't great and I found Pilocarpine made me quite unwell. So what has helped you? Here is my list, so far. I know…
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Squamous Cell Carcinoma as Secondary Cacer. Unknown Primary
Hi , I'm a 62y/o Aussie male .Retired Hotel Publican & Head chef. Married for 35 years. Retired for 8 years . Spent 6 travelling around OZ in our 28' caravan. I have been diagnosed, with SCC. of the Lymph Nodes on the left side of my neck.Ultrasound FNA was done. CT with contrast of head and neck . To conferm the SCC. But…
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Cancer in throat that has spread to glands in the neck.
Dear Sir, I need your kind help regarding my father cancer. He has a Cancer in throat that has spread to glands in the neck. Which treatment would be better for my father? Cyberknife treatment? or VMAT? or chemoradiation? "Hydrogen Peroxide Cancer Treatment, nitrogen flush" "transoral laser microsurgery" ? Thank you very…
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By the time this year is out...
I would have endured... 5 biopsies 2 surgeries 4 CT scans 4 PET scans 2 MRIs All this for a stage 1 tumor on my tongue. Does this seem excessive?
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NPC Tongue Paralysis
Hello everybody!! I was just wondering if anyone has had tongue paralisys post NPC treatment? And if yes, is there anything that can be done? I am almost 5 years post NPC treatment and last February the left side of my tongue paralyzed and now it is the right side. Also have vocal cord paralysis (mostly left sided), dry…
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Help !!! Recommendation needed for Radiation Oncologist in NJ
I need reviews for Dr Shupack in memorial Sloan in Basking Ridge facility. Or recommendation for the best radiation oncologist in NJ. My 42 yr old non smoker husband is diagnosed with stage 1 vocal cord cancer and dr shupack at MSK is suggesting 6 weeks radiation. We are also awaiting CT scan to finalize the stage. I…
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Newly Diagnosed: Squamous Cell Carcinoma (Level 4) - Tonsil suspected
Last Thursday, my doctor called with the biopsy results of the curious "swelling" found on the right side of my neck . . . squamous cell carcinoma. CT Scan showed that 3 lymph nodes on that side of neck have become enlarged. This was tough because I originally thought I had mono or a viral infection. It was awful weird to…
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Boyfriend with vocal cord cancer
Hi everyone: I'm new to this site and just looking for some advice. My boyfriend was diagnosed with vocal cord cancer 3 months after we met. He went for 6 weeks of radiation and at his 2 month follow up after the radiation, the tumor looked exactly the same. Next was surgery, he had a partial laryngectomy in June, terrible…
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I think something is wrong
I guess once you are told that you have cancer, you can never feel "safe" again. At least that's the way I look at it. At my last follow-up (7 months post surgery for tongue tumor removal) I pointed out something I felt on the roof of my mouth. It's kind of a rough patch. That's when he made the comment about smoking that…
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Doctor did not let me do my Erbiux today, cause neutropenia was 0.84 (840)
Hello after they took my bloodtest the NP came to me and told me I cannot do my Eritux treament today, cause my neutropenia was 0.84 (840) which is less than 1 (1000). I asked her to message the doc. and she was nice enough to do it and got another nope from tthe doc. explaining that I will pose myself to having serious…