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Travel Insurance Denied
Although I love traveling with Overseas Adventure Travel, they use a company called Tripmate.com for travel insurance. Tripmate is a truly evil company, I purchased their cancel for any reason trip insurance via the Overseas Adventure Travel website. Then when I was diagnosed with throat cancer a month after purchasing the…
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Base of tongue cancer
I myself have been battling cancer in throat since 2013, had a billateral neck dissection, a few years ago I had a ulcer come up on the base of tongue and after consulting my doctor I was told that this was just an ulcer, well after about 4 months they finally did a biopsy, and found out that I had cancer on base of…
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tongue cancer - reoccurance
Hi All, After 9 years my tougue cancer is back. I just got the biopsy result today and made all the follow up appointments. Anyone went thru reoccurance? Any advice? I know second time around options are liited. This group helped a ton my first time around. I am so grateful for this group. Thanks, Sam
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Deciding between 2 treatment options
So, I met with 3 Drs yeaterday. Chemo, Radiation, and ENT. After the meetings were over, We walked out with 2 options to pick from. Surgery by TORS to remove tonsils, follwed by removing swollen lymph nodes in neck along with radiation, with a possible Chemo backup if lymoh nodes appeared ruptured. Or, Chemo and Radiation,…
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Tongue Flap complications
Hello fellow HNSCC patients/ surviv Its been a long time since I have posted... This month, I am 4 years out from my diagnosis, G Tube, etc. I am 71.5 pounds...and my tumors have been Recurrent, even after Radiation treatments. My esophagus is severely strictured--- Twice it closed up completely... For 2 year now, I have…
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tips please for TORS & neck surgery.
Greetings. I'm having TORS on the base of the tonque and regular surgery on the top lymph node(s), just under the jaw bone - both on the right side on 8/24/21. They have yet to confirm the primary and are going exploring on the base of the tongue. Squamous Cell + HPV. This will be in Seattle at Swedish and then any…
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Checking In
Hi everyone. Sorry I haven't been on here in awhile. Just had an appt this morning with my ENT. I'm still on a permanent trach and FT unless I opt to get a larengectomy. I have to have my trach and Gtube changed every 3 months. So not fun at all, plus being scoped every few months, which I have been refusing until today.…
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Summer Flowers
Around the house. I hope everyone is enjoying God's Blessings of summer's bounty of fresh vegetables and lots of flowers and birds. Wishing a happy rest of the summer to all you folks. Wishing You The Best-Take Care-God Bless-Russ
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Any mid 20 year olds??
hey y'all!! I was 23 when I was diagnosed in 2020, I am finished with treatment and am now 24!! This may sound odd, but I Was curious if their were any other 20 something year olds on here that were looking for a cancer friend?! I feel like I haven't really been able to relate to many people in my life lately, which has…
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Immunotherapy for esthesioneuroblastoma recurrence
Hi, My boyfriend has a second recurrence of esthesioneuroblastoma that is a new tumor , nickel sized, located between his nose and eye. Drs offered the big surgery taking out the eye, some bone and tissue with then a flap put in place for the hole . They offered hope that this would stave off another recurrence. Then the…
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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…