SUPERTHREAD Read only ~ Contributed by SweetBlood22

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Welcome new members! This is a read-only post that provides information about resources we, members of the head and neck forum, found helpful as well as our answers to most frequently asked questions in our forum.

Please feel free to send me a private message (PM) if you have something you think should be included here.

Disclaimer: All content in this post has been contributed by head and neck forum members and is based on personal experience. Content does not necessarily represent the views of the American Cancer Society. Forum members derive no benefit (direct or indirect) from any of the companies/organizations, resources or products that we cite. We are not selling/products (against CSN terms and conditions of site usage), merely offering information about what many of us have personally experienced.

MAKING SENSE OF YOUR DIAGNOSIS
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ORAL CANCER FOUNDATION

Has tons of info for HNC patients from what to expect thru treatment, side effects, after care and support. 

NAVIGATING CANCER. HEAD AND NECK CANCER

CANCER SUPPORT

HEAD AND NECK CANCER QUESTIONS AND ANSWERS

SUPPORT FOR PEOPLE WITH ORAL AND HEAD AND NECK CANCER

HEAD AND NECK CANCER SITE MICHAEL DOUGLASS WAS ENDORSING

I JUST FOUND OUT I HAVE CANCER

HOW LONG WE HAVE SURVIVED

YOU ARE NOT ALONE. ON ANY GIVEN DAY...

RADIATION SIDE EFFECTS:
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ESOPHAGEAL STRICTURES

Strictures can be a side effect with radiation. Sometimes dialations can remedy this severe side effect. 

SIDE EFFECTS OF RADIATION LIST

DYSPHAGIA PROBLEMS SWALLOWING

ORAL HEALTH

SIDE EFFECTS OF RADIATION FOR HNC

GUIDELINES DURING TREAMENT

SHOULD I DO RADIATION AND/OR CHEMO?
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POST OPERATIVE RADIOSENSITIVITY IN PATIENTS WITH FANCONI ANEMIA AND HEAD AND NECK SQUAMOUS CELL CARCINOMA

TO RADIATE OR NOT RADIATE that is the question

IF THEY CANNOT FIND THE PRIMARY TUMOR DO WE RADIATE?

TIPS FOR HANDLING THE MASK:
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SURVIVING THE MASK

RADIATION MASK ADVICE

FIRST DAY OF RADIATION TIPS

PRODUCTS AND TIPS THAT HELP SIDE EFFECTS:
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THE ESSENTIAL KIT FOR HNC PATIENTS DURING TREATMENT

GLUTAMINE

ARTICLE ON BENEFITS OF GLUTAMINE

ABOUT MAGIC MOUTH WASH or MAGIC SWIZZLE FOR MOUTH PAIN

STRETCHING AND NECK MASSAGE INSTRUCTIONS

GLUTAMINE

ARTICLE ABOUT GLUTAMINE AND THE PREVENTION OF MUCOUSITIS IN BMT PATIENTS

NESTLÉ CANCER NUTRITION PRODUCTS

NEW AND ABOUT TO START RADIATION

RAPIALEX WORKS TO SOOTH AND PREVENT RADIATION BURN

SWALLOWING EXERCISES

NATIONAL LYMPHADEMA NETWORK

DRUG SIDE EFFECT WARNING
FENTANYL PATCHES AND HOT SHOWERS, HEATING PADS OR ELECTRIC BLANKETS ARE A DEADLY COMBINATION
Fentanyl can be a Godsend for pain control, but you need to be aware of this. 

PRODUCTS TO HELP SOOTHE DRY MOUTH
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BIOTÈNE PRODUCTS

GC  DRY MOUTH GEL

OASIS DRY MOUTH PRODUCTS

STOPPERS 4

CO BIGELOW LIP BALM moisturizes lips and keeps mouth moister

TOOTHETTE ORAL MOUTH MOISTURIZER. Nurses in radiology oncology gave me packs with this in it.  Also contained a rinse and sponges on a stick to brush with when a toothbrush was too painful.

To PEG or NOT to PEG that is the question:
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PEG TUBE NEED TIPS

GETTING OFF THE PEG TUBE

SKIN CARE AROUND THE PEG TUBE

THOUGHTS ON GLUTAMINE, AMIFOSTINE, AND PEG

ASK THE EXPERTS.  SHOULD MY HUSBAND GET A PEG TUBE?

GUIDANCE DOCUMENT FOR PROPHYLACTIC GASTRO FEEDING TUBES FOR HNC PATIENTS

EXPLAINATION OF PEG TUBE PLACEMENT. EXACTLY HOW PROCEEDURE IS DONE

MALNUTRITION PLAYS A KEY ROLL IN MORBIDITY FOR HNC PATIENTS

SIDE EFFECTS FROM HNC CHEMOTHERAPY AND RADIATION. Malnutrition and nutrition.  

PEG TUBE BELT used to hold peg tube in place

ACTUAL PEG TUBE PHOTOS:
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PHOTO OF MIC-Key BUTTON

The above is a great option if you can get it.  No long hose attached and lays flat under clothing.  Very comfortable. 

PHOTO OF A PEG TUBE

MIC-KEY BUTTON LOW PROFILE FEED TUBE Kimberly Clark Site

NUTRITION / HEALTHY EATING / LIQUID NUTRITION TIPS:
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HOW TO START EATING AGAIN.  Lots of soft food ideas and links to many recipes.

EASY TO SWALLOW RECIPES

TRACKING CALORIES AND NUTRIENTS WITH MY PYRAMID TRACKER

CONTAINS ADVENTURE BOB's TUBE FOOD RECIPE

LUCY's REAL FOOD. How to make real food for tube feeding instead of using canned

LIVESTRONG nutritional guidelines for HNC

Livestrong has become a great resource for great articles on nutrition and healthy lifestyle. 

BEST WEIGHT GAINING DRINKS
These are good tips and recipes if you can only manage liquids. 

THE 30 HEALTHIEST FOODS

HEALTH BENEFITS OF VEGETABLE JUICE

JUICER RECIPES

JUICER REVIEWS

DR OZ  GREEN SMOOTHIE

SMOOTHIES

EASY TO SWALLOW COOKBOOK

HOW TO ADD WHOLE GRAINS TO YOUR DIET

EASY SLOW COOKER VEGETARIAN DISHES

BENEFITS OF FLAXSEED

CANCER FIGHTING FOODS

ADVANTAGES OF EATING ORGANIC FOODS

JAMIE OLIVER VEGETARIAN RECIPES

HOW TO EAT HEALTHY ON A LOW BUDGET

An article on ask dr sears . com called THE ANTI CANCER DIET

WHAT SHOULD YOU EAT?  A BETTER FOOD PYRAMID

VITAMIX  Emulsifier Blender. It is my understanding they will give a discount for cancer patients.

HEALTHMASTER EMULSIFIER

WHAT IF I CANNOT WORK?:
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DISABILITY GUIDE

HNC COMPASSIONATE ALLOWANCE

DISABILITY AND WORKING GETTING PAID?

SOCIAL SECURITY DISABILITY

CANCER AND THE WORK PLACE:
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Questions and Answers About Cancer in the Workplace and the Americans with Disabilities Act (ADA)

Enforcement Guidance:
Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities Act

INSURANCE ISSUES
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PRE-EXISTING CONDITION INSURANCE PROGRAM  

CHEMOTHERAPY:
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CHEMOTHERAPY SIDE EFFECTS SHEET

The above link is from The National Cancer Institute. 
This series of chemotherapy side effects sheets has medical advice and practical tips to help you during chemotherapy. Learn about self-care, medical problems to call your doctor about, and questions to ask your doctor.

NUTRITION DURING CHEMO

COOKING FOR A CHEMO PATIENT

NECK DISSECTIONS:
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CLASSIFICATION OF NECK DISSECTIONS

NECK DISSECTION PATIENT INFORMATION

The above answers tons of questions about neck dissections. 

IMRT RADIATION:
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LESS  XEROSTOMA WITH IMRT RADIATION WITH HEAD AND NECK CANCER

OVER VIEW OF IMRT RADIATION

THE ROLE OF IMRT IN HEAD AND NECK CANCER (PDF)

CYBERKNIFE INFORMATION
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CYBERKNIFE DOCUMENT. CyberKnife offers alternative in head and neck cancer.

CYBERKNIFE. What we treat.

CYBERKNIFE  FAQ

Da VINCI SURGERY:
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DaVINCI SURGERY HEAD AND NECK

HPV AND HEAD AND NECK CANCER:
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HPV INFORMATION

VACCINATING BOYS WITH GARDASIL

A PDF of HPV AND HEAD AND NECK CANCER

INFORMATION ABOUT GARDASIL

BEST US HOSPITALS:
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US NEWS BEST HOSPITAL RANKINGS

TUMOR STAGING:
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EXPLANATION OF HNC TUMOR STAGING pdf (long)

THREAD ON TUMOR STAGING

HNC TUMOR STAGING smaller article

DENTAL ISSUES AFTER RADIATION FOR HNC:
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Osteoradionecrosis of the Mandible
Talks about ORN and whether HBOT work when having to extract teeth after radiation.  Some pictures, you may not want to see if you are squeamish. 

IMPORTANCE OF A DENTAL APPROACH IN HNC THERAPY

RADIATION THERAPY AND ORAL CARE

Tooth removed today POST radiation

MUCOEPIDERMOID  CARCINOMA:
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THREADS FOR MUCOEPIDERMOID CARCINOMA (MEC)

CONTRIBUTIONS FROM OTHER CSN MEMBERS:
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RADIATION VIDEO

TORS VIDEO
ABOVE TWO ARE ACTUAL VIDEOS SUBMITTED BY HUSKER FAN. RADIATION AND TORS

HEAD AND NECK CANCER KIT. adventurebob's thread on the kit that every HNC patient could use.

Where in the World Are You
Map of CSN members made by John G

A LIST OF QUESTIONS THAT YOU CAN TAKE TO YOUR DOCTOR BY DADDISGIRL

Dennis K7BV Cancer: Uncensored.
This is a member's personal blog about his base of tongue throat cancer journey.  (I've not read it yet.)

SCIENCE BASED MEDICINE
Contributed by Hal61

SCAMBUSTER's ALTERNATIVE CANCER TREATMENT WEBSITE

LIST OF ACID AND ALKALINE FORMING FOODS. Link provided by Scambuster

WIFEFORLIFE's HUSBAND RECOMMENDS THIS JUICE+ SUPPLEMENT

WEBSITE FULL OF HELPFUL LINKS FOR HNC:
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A WEBSITE OF A LIST OF "THE BEST HEAD AND NECK CANCER WEBSITES"

HOW TO SEND A PRIVATE MESSAGE
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To do a private message, just look at the upper left hand corner of this page. Under the first burgundy colored tab labeled CSN, the sixth item down says CSN EMAIL. click on that. Then on the bottom click on WRITE A NEW MESSAGE. From there you must fill in the person's screen name exactly as it appears. If you have added them as a friend, you can use the MY FRIENDS button to scroll through and select the person. You must enter in a subject, and then you can just type your message and hit SEND PRIVATE MESSAGE.

GLOSSARY OF SOME TERMS
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Definitions of commonly used abbreviations and terms. 

We all use abbreviations here and new-comers sometimes have a hard time understanding them. 

SCC - Squamous Cell Carcinoma
Dx - Diagnosis
Rx - Prescription
Tx - Therapy? Treatment?
BOT - Base of tongue
PEG - Percutaneous Endoscopic Gastrostomy aka feeding tube

HPV - Human papillomavirus
rad - radiation
ENT - Ear, nose, throat Doctor aka Otolaryngologist
Glossectomy - Removal of tongue
Metastasis - (mets) Spreading of the cancer
XRT - Conventional external beam radiation therapy aka EBT
IMRT - Intensity modulated radiation therapy

PET - Positron emission tomography scan
CT/CAT - Co-axial tomography scan
EBT - External beam radiation therapy aka XRT
OCF - Oral Cancer Foundation
NED- No Evidence of Disease 

HBO - Hyper-baric oxygen Patient given oxygen under pressure prior to dental surgery.
Stage - Development of the cancer

TNM - System for describing the cancer (tumor, nodes, mets)

Margins - Refers to the margins of biopsied tissue; clean margins indicate that all the visible cancerous cells were removed.
Biopsy - Removal of sample or whole of suspect tissue

Xerostomia - Dry mouth resulting from reduced or absent saliva flow

RO - Radiological oncologist
MO - Medical oncologist
DO - Dental oncologist

Tumor Board- team of doctors that meet to discuss your treatment. Some hospitals have these teams..  Made up with ENT, Radiologist Oncologist, Hemotologist Oncologist, Dentist, gastroenterologist, nutritionist...