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Hen and neck biopsy results are in.
So, my ENT called yesterdat morning to advise biopsy results came back as hpv positive squarmous cell. He mentioned the number 16 but, I did not think to get clarification on what he meant by 16. He said it is in the tonsil on left side, same.side as my swollen lymph nodes in neck. Can anyone give me info on this? He also…
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Cardiac Issues
I haven't seen any references to cardiac issues that arise after treatment, so I have to assume that mine are coincidental rather than causitive. I had a sleep study done prior to my diagnosis and treatment (3years prior) and then had a repeat done about six months after treatment that noted significant bradycardia. This…
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Zoom meeting for HPV Negative head/ neck cancer patients
Hello forum, Today August 1st I spent over an hour on the Phone for n a Zoom meeting. Tony is an attorney going through HPV Negative HNSCC,, and he contacted SPOHNC ( Support for People with Oral and Head & Neck cancer) because he wanted more information. Specifically, he became very aware that the Research he found…
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Dental care
What is everyone doing, or been instructed to do for regular dental care at home? Upon finihsing my radiation and chemo treatments in 2018, the folks in the dentistry molded some trays and instructed me to use a 1.1% fluoride gel with the trays everyday for the rest of my life. They were renewing my prescription for the…
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Open surgery for eye removal due to esthesioneuroblastoma
Hi, My boyfriend is in his second recurrence of esthesioneuroblastoma. It is now so close to his eye the doctors want to remove his eye and possible nearby structures....a ten to twelve hour surgery. Has anyone been through this? What was your recovery like, pain, postoperative care? Any info, personal experience or advice…
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Taste & Saliva
One of the big questions I had after finishing my treatment for HPV 16 tonsil / lymph node cancer was when I was going to get my taste and saliva back. I had 35 rads and 3 high dose cisplatin treatments. For me, this was one of the hardest things I dealt with. I would look thru these threads all the time to see the…
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Non HPV Squamous Cell Carcinoma, seeking
Hello Forum, Perhaps some of you also received the e-mail I got today, from Chris at The Head & Neck Cancer Alliance. I am curious to hear if anyone got the same letter. She is seeking someone like me, with Non HPV HNSCC, specifically to communicate with and support a like patient. His tumors are Negative for HPV, as all 6…
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TOOTH EXTRACTION
After finally finding an Oral Surgeon that accepts my insurance, I had an intial consult yesterday. He took a look at the tooth that was needing pulled (lower lateral Incisor) and said there would be NO NEED for HBOT treatment. He gave a couple reasons why and those were because my body was already trying to rid itself of…
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How soon post treatment were you able to taste and eat?
Just wondering. Looking forward to eating again. I tried to keep eating as long as possible but mostly tube fed now because food is repulsive to me right now-no flavor or too salty. I only have 5 more rads to go. I was able to eat a couple bites of pizza yesterday but all I could taste was just the teeniest hint of bread…
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New to the group, hoping to understand my post treatment emotions...
Hi, I am 3 months out from surgery and radiation for mucosal melanoma in my nose. The orginal diagosis and prognosis were bad, the treatment was brutal but not as bad as other people I saw and got to know during the 30 radiation treatments. I am recovering and am having more trouble with depression and 'survivor's guilt'…
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New member and scared.
So, spoke to ENT this morning about pain and wirrying about the bioosy resluts. He told me the results are not back yet but, he sees that they did a scan for lymphoma and says it is not lymphoma. Is that good??? Please advise
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Just A Quick Update
I have had a recent visit with my ENT from Hershey Medical Center and he says everything looks OK, clear, and stable after scoping me about 2 weeks ago. Last week I had a follow-up visit with the dermatologist and she gave me the whole upper body, head, etc exam and removed one more suspect spot. Previous to that several…
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Pre Diag and have questiins
Hello, I just had cinsult with ENT today for his exam and to go over CT results. He advised he thinks it is Cancer and could not advise further. He suggested a biopsy for next Thursday to remove material from swoolen nodes in my neck. He is removing from my throat area and from masal area next to my uvela. I am scared out…
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Port
Those that have a port, does it bother you or hurt when you sleep. I'm now 5 yrs out but weekly IVs from being over Chemoed caused a sodium issue that I need a hydration bag weekly. Chemo destroyed My arm veins so very hard to manage & a port was suggested. My niece just DX by Cancer on 4 drugs had a port installed before…
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Hello everyone! About time I introduce myself!
Greetings to all. I have been lurking on this board for almost two months now while I went through my treatment. The knowledge I learned here from those who have gone before me has been invaluable, so many great people here helping others! I hope to do the same. During the late summer of 2020, I was experiencing chronic…
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Broken bone after radiation
I had neck/throat cancer over 10 years ago. I had chemo and radiation, 40 radiation treatments. I've had problems with my head and mouth since, barely have saliva, hearing loss, cararacts, lost 2 teeth,but I've lived with that. Recently I fell and broke my jaw. It's been wired a month, but it does seem to be healing. I…
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long term radiation problems assoc with ssc base of tongue
My husband was diagnosed and treated for stage 4 base of tongue ssc seven years ago. After 8 weeks of chemo and radiation followed by a radical neck dissection, he has been cancer free since! The effects of radiation seem to be accumulating though. He has developed problems regulating his blood pressure with fluctuations…
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Yawning and Sneezing
After months of no yawning or sneezing, both are back this week (4 weeks post treatment). It is a little painful when they happen, but I figure its good for my mouth and operating systems...?
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Forum Posting Info
Hello folks I hope everyone is doing as well as possible. I just wanted to post a couple of items relating to posting on the forum. Some may already know about them and some may not but here goes. I have found out if you hold down the shift key when you press enter it doesn't skip a line and leave a space between them.…
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New to the group!
Good evening, I'm a 42 year old male and just completed 7 sessions of chemo (cisplatin), 35 sessions of radiation for Head & Neck a week ago. SCC, HPV+. I'm so glad the treatment is done. I went through the first 4 weeks of radiation with not too much issue. I experienced the saliva thickening and definitely the metallic…
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Just diagnosed
Hi, my name is Brian. I'm 45 and was just diagnosed with cancer last week. I had a small lump in my neck and they found "fragments of squamous cell carcinoma." The ENT doctor informed me this is not the source...I have a PET scan Thursday. To say I'm scared, anxious and nervous is an understatement! I don't smoke or drink…
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HPV16 Symptoms! Not Cancer Symptoms! past or present?
I was P16+ T1 left tonsil, I had TORS radical tonsillectomy and selective level 4 neck, 44 nodes all clear, No rads No chemo. I believe that I could feel HPV16 flaring up causing tissue change a year before I found a bump on my tonsil. It first started a year before finding the tumor with a significant episode of extreme…
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dysphagia swallowing problems following NPC
Hi from uk. Have not caught up with this board for years. plagued by swallowing problems since treatment 20 years ago. Eating has never been the same and cannot eat lumpy foods at all well without choking .does anyone else find it has not gone back to near normal?
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Looking for advice about radiation tx
49 yo female/non smoker. Diagnosed with squamous cell carcinoma on my tongue. It was caught early, was a small spot on my tongue and was anticipated that surgery (with modified neck dissection) would be the end of it. Blessedly I made it thru the surgery with very few issues and am healing well. Unfortunately the neck…
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Cartoid Artery
I am 28 months out from finishing my treatment from HPV 16 tonsil / lymph node cancer and am still doing great. My GP just had me do an ultra sound of my cartoid arteries to determine if any issues are developing. I have been warned by my ENT that narrowing of the arteries is a possible side effect of the radiation. My ENT…
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Still loosing weight after peg removal
G'day im new here and have been eating by mouth for about a month. The problem I'm still loosing weight, I have the peg still but am very reluctant to use it. I'm going down to the hospital to have a cat scan and the peg removed this week as they found a spot on my lung. I've had my post treatment scan and there was a…
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Osteoradionecrosis
Wow! Thought I was in the clear! Three weeks from my fourth year NED report! Now I have something else to deal with! Osteoradionecrosis! Quite the mouth full, literally! I have options of , hyperbaric chamber and surgery to do skin graphs, or chamber alone, or try meds to help encourage blood flow.. anyone out there have…
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PEG tube pain
Had PEG tube put in on June 1st and am healing slowly. Still have some blood on gauze when I clean and change it. I am sore at the location however, the real pain I am having is to the left of the stoma... about five inches away. It is like a muscle spasm that only lasts a few seconds at a time. I called my Gastro doctor…
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Mouth and throat sores after treatments
Hi, one month after treatments for neck and throat cancer 35 rads and 5 chemos , I still am getting these little mouth sores around my troat that look like little blisters they come and go. Mainly appear during eating , they are painful and resolve the next day or in several hours until I irritate the troat eating again.…
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Immuno-therapyTrial
I thought I would just post this and maybe some readers or someone they know may be interested or need it as an option. PDS Biotech is developing a new immuno-therapy designed to target HPV-16 called PDS0101. PDS0101 has been shown to stimulate high levels of HPV-16-specific killer T-cells that target and kill head and…