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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…
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Reality check
Hello everyone. Wanted to let you guys know that I had doctors appt today to address my breathing issue. ( Paralyzed right vocal cord blocking airway.) Well this is a new doctor for me who I actually liked! He''s compassionate, helpful, and caring. Very rare combination for Specialist. He''s a doctor, professor, and…
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one year anniversary
Today is my one year anniversary since finishing my treatment for stage 1 HPV 16 Tonsil Cancer with mets to 3 lymph nodes in level 1. The old staging would of been stage 4a. Had Pet Scan 4 months after treatment and was NED. The cancer was only on the right side. My treatment consisted of 35 rads and 3 high dose Cisplatin…
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Tooth Extractions
Can someone offer either info or advice on this topic? I went to the dentist with a toothache and he advised that I had decay in two teeth and they could not be saved. They are in the back so I wasn't too upset. Also, the oncologist had told me more than once to expect problems with my teeth because of the radiation. So…
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Scar tissue
Hello, I was on this forum a lot back in 2017. My husband was diagnosed with cancer of the head and neck with his left lymph node involved. He finished treatment in April of 2017. All has been well since then. His scans and scopes have been clear. When he received his last CT scans about two weeks ago the oncologist said…
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Skin Tearing
Has anyone had an infection(they think it originates from some 'dead bone' area of my chin) in their face after radiation? I am on antibiotics for the infection but one area of my skin that was swolen and had a sore underneath the skin has split right through to the mouth. It started as a pin prick and is now a horizontal…
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Update: 18 months Post
Hi Everyone - It's been about 18 months since my husband finished treatment for Stage 4 HVP+ tongue cancer, with mets to lymph nodes in neck. (Tongue surgery, chemo, radiation, modified radical neck dissection.) Third scan just came back NED, which is especially great, since in the meantime he'd developed a "new" cancer on…
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Another Chapter in my H&N Journey-9/13/2019 Update
New Update 9/13/2019 I will try to keep this and future updates as brief as possible but with enough information. Tuesday, Sept 10, We met with my physician from Hershey Med. PA, Dr. Guy Slonimsky at Hershey-Penn State Health Lime Spring Outpatient Center Lancaster, PA. I had a thorough checkup and was scoped to check my…
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Interesting Web Site-Medical-Just FYI
I found this web site and am still checking it out. Also has apps you can put on phone or tablet. You can look up any medical condition-- The main page-- https://www.uptodate.com/home The demo video page-- https://www.uptodate.com/home/help-demo
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How much does it matter where you have your radiation therapy?
How important is it to have your radiation therapy done at a well-known institution? If you had the exact same radiation treatment plan (the same areas were to be radiated with the same dose for the same number of sessions) would it make a difference if you had this plan realized at a good local hospital or at a national…