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One More Update
Stated earlier that I had the neck dissection and 2 operations to stop the leaking khylie valve. At that point from x rays a suspicious node was discovered so I underwent another op to biopsy the node and thank God it was negative. And then I had a temporary feeding tube in my nose so another op to put one in my belly…
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Side effects of Fluorouracil (5FU) for NPC Nasopharyngeal Cancer
I was diagnosed with Nasopharyngeal Cancer back around the 1st of the year (2019). I have finished my radiation treatment, along with 3 rounds of Cisplatin chemo. At this point, I am scheduled for 3 more follow up treatments of Chemo - Fluorouracil (5FU) along with Cisplatin. This will be slow released, via a "ball" over a…
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Not doing well
Hi everyone: Appt tomorrow with speech/swallow therapist. Saw another specialist last week. He said my difficulty in breathing from scar tissue in airway area and from paralyzed cord also blocking airway. I can breathe just shortwinded. Kind if difficult, but living like that. I'm on a FT for life, and they want to put…
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Preventing
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extracapsular spread
My name is Angel and I have been diagnosed with stage 4b tonsil cancer. I had a neck dissection where my ent found 4 lymph nodes positive for cancer and extracapsular spread in the fatty tissue in my neck. He said my chances for a cure are at least 50/50. When I saw my oncologist, who had initially told me 50/50, but then…
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Voice Banking or Message Banking for Impending Voice loss
New here. Has anyone here ever done Voice Banking or Voice Message Banking? And then been able to get the use of the recordings turned into using your own voice rather than robotic sounding?? Is this technilogy even ready yet? My neurologist is recommending I bank my voice now because it seems I'm heading for loss of the…
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Wbcgar update
After five operations and complications I am hoping to be home soon. Too hard for me to post right now, but I will tell my story to you guys later. Wishing you all well - God Bless!
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Finally Home-Just a Brief Update
OK folks saying Hi and I am finally home. Just came home Monday afternoon Nov. 4 and had my first night at home in awhile. Had my first day today. The wife and I spent most of today dealing with the stuff they sent home from rehab,organizing meds and had visiting nurse and speech pathologist visit. I am still tired and…
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Full Disclosure Survey
Just wondering how many of you were informed of the severe consequences of treatment? Our docs soft-pedaled info and were quite evasive. Is this common?
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Malignant carotid body tumor--new member
Hello, new friends. I am facing surgery in a month or so. Although I live in NJ, my doctors are all at Columbia-Presbyterian in NYC. They're all specialists with an impressive number of successful resections under their belts. My tryst with CBT (Carotid Body Tumor) began in February. I went into the hospital with some…
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Recurrence already?!
Ok, our cancer story. Hubby diagnosed with Stage 4 base of tongue and one lymph node. We were not a candidate for surgery due to an unfortunate accident which landed him with a broken leg and several blood clots. We completed 35 rads and 3 Cisplatin on July 29, 2019. Had a CT scan in September which cleared the lymph node.…
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FT life update
Been a while. FT on 8/6. GP said 1600 calories, but struggled w/1.2 Jevities and aspiration. Had to get pro-active to get 1.5 okayed by a competing Medical system. Dietitian said I need 1900. So, doing 1-Boost VHC & 4-Jevities= 1940 calories/day. And, my weight loss has stopped! Physical Therapist said I should have gained…
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Good News Update!
It has been 5 years since I was diagnosed with stage III edinocarcinoma in my ethmoid sinus. At the time, I had suffered from a stuffy nose in just one nostril for about a year. I had gone to my GP several times before his substitute referred me to a specialist -within 5 minutes of that office visit. The specialist did an…
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Nasal prosthesis help following rhinectomy
Hi, I'm new to this network having stumbled across it while searching for information about a nasal prosthesis. My beau, who is 73, was diagonosed with squamous cell carcinoma in his nasal cavity several years ago and before I came into his life. He had his septum removed and was told all was well. Less than a year into…
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Thyroid
Had blood test for Thyroid yesterday and it is starting to fail. My numbers were normal in March and are now over the normal range. I start medication for my underactive thyroid as soon as I pick it up at the pharmacy. I finished treamentt for Tonsil Cancer last September and had 35 rads and 3 high dose Cisplatin chemo…
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HPV P-16 Throat Cancer Survivor-Am I Putting My Sexual Partners At Risk?
I am NED for over 2 years. I was HPV positive P-16 Stage IV throat cancer. I had a tonsillectomy, 35 radiation treatments, chemo, and a modified radical neck dissection. Then the wife filed for divorce. Now, I'm now out on my own entering into my first sexual relationship, post-divorce. The Drs told me I could've been…
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15 months NED!
Just a quick update. Went to my Onc doc for my 15 month check up. all good. Slight dry mounth on right side of throat mostly at night/when I wake - other than that....100% back to normal. Right side of neck shows slight dryness/scarring from proton rads. Happy with results.
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Up Date and Thank you's
So many in this group to thank. The list is very long, and some we have lost even. Just some, debbiejeanne a special lady that greatted me first and a long time friend. CivilMatt allways there to offer me some very sound advice when I needed it and listen when I needed to vent. A true friend I am privileged to know and…
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5mm Lung Nodule
In July 2010 i had stage 4 cancer on my tongue and lymphnodes in my neck. I had surgery to replace 7/8 of my tongue and a double neck disection. Along with chemo and radiation. On August 16th my left ribs was hurting behind them. I was tirder than i have ever been. Also i was having problems breathing. With my shoulders…
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ROLL CALL 2019 - SECOND UPDATE JUNE 17, 2019 CLOSED
PLEASE READ ROLL CALL 2019 Second UPDATE June 17, 2019 (Full moon tonight) 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.…
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G tube placed. Hurting
Hi Husband got G tube and Portacath today. G tube hurting more than I anticipated. What are your experiences?
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Stage 4 Buccal SCC PNI, poorly differentiated, 3 Positive nodes
Hi warriors, My husband (48yrs old non-HPV) has stage 4 Buccal (Cheek) cancer, poorly differentiated, three positive nodes, deep invasion with peri invasion. He starts radiation Monday. Two cancer institutes did not recommend chemo since margins clear. All of my research gives a VERY poor prognosis. Thanks to this group…
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New treatments and trials for head and neck cancer (especially HPV+)
A couple people mentioned in my Back In The Saddle thread that they'd be interested in some of the information I've discovered about new treatments for head and neck cancer. I'm in an interesting position because while I can have approved treatments for either lung cancer OR head and neck cancer (both HPV+ squamous cell),…
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Paralyzed vocal chord -??
I recently had a scope done and my ENT said my left vocal chord was paralyzed. Just another wonderful gift from radiation. Ugh.. I was wondering if anybody had this problem when having a follow up from their doctor. I appreciate any feedback from you. Thanks. Hugs and God bless.
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Checking in
Hi all H&N members: Had CT scan that showed "mass" in my throat. So doc ordered a pet scan. Had pet scan and results were NED. No cancer recurrence. That was the good news. Bad news is my left vocal cord still paralyzed and blocking my airway. I have trouble breathing. But I'm dealing with it, cause will not have a…
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Button FT
Anyone have experience w/a button FT? And if so, what type. Found a site, now that I'm looking at a change I wanted to know about the balloon FTs. Found a site: https://www.feedingtubeawareness.org/living-with-g-tube/ Also others where they tell about the different types, now, and a tool the Dr.s can use- an Obturator- to…
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Improvements
There is a bit of a gray area between improvemnts and just getting used to the new normal, but little by little I've noticed some definite improvements, especially in my saliva recently. When I think back to a year ago I didn't really know about Xylimelts or Act dry mouth lozenges, so I had to be absolutely sure that I had…
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Abi-normal?
We use abi-normal a lot to describe our lives as cancer survivors. I know what it means when we say it, but does anyone know where it came from? Thanks. mike
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Two Years NED!!!
Hello Everyone! I dont check in often anymore and I’m certainly not here to brag, but I know when my husband was first diagnosed, I loved hearing success stories. Well, my husband is two years out from treatment and just got a clear scan and scope! (He had SCC HPV+ with an unknown primary). He had gone through 8 rounds of…
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Hello everyone
I have been here for a month,month and a half probaly--1st time posting.My husband had stage 4 scc.He has just finished 35 rads--did very well,no feeding tube--eat everything from start to finish (steak chops etc)He has really been thru a rough time for 2 yrs now.Last summer he had a 3 way vascular bypass where they put a…