Superthread (Read only) ~ contributed by Sweetblood22

Skiffin16
Skiffin16 Member Posts: 8,305 Member
edited October 2022 in Head and Neck Cancer #1

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

Please feel free to send Skiffin16 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 based on their personal experience with cancer. 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

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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RADIATION FIBROSIS SYNDROME ~updated 17AUG2015

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 Cancer Foundation: https://oralcancerfoundation.org/complications/dysphagia/

Radiation induced Dysphagia: https://www.entcolumbia.org/health-library/radiation-induced-dysphagia

Dysphagia information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028

Dysphagia information MD Anderson: https://www.mdanderson.org/cancerwise/dysphagia-in-cancer-patients--what-to-know-causes-diagnosis-prevention-treatment.h00-159305412.html

L'HERMITTE'S SIGN/SYMPTOM ~added 12JAN2016 - JPG

ORAL HEALTH

SIDE EFFECTS OF RADIATION FOR HNC ~updated 17AUG2015

-GUIDELINES DURING TREATMENT 

SloanKettering’s Great Resource: https://www.mskcc.org/cancer-care/patient-education/radiation-therapy-head-and-neck

ACS: https://www.cancer.org/content/dam/CRC/PDF/Public/5025.00.pdf

One Thread on Moisturizers and Creams: https://csn.cancer.org/discussion/240306/aquaphor-as-a-moisturizer

Thread on Clothing Ideas: https://csn.cancer.org/discussion/comment/915410#Comment_915410

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 ~updated 17AUG2015

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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MY RADIATION TREATMENT VIDEO SESSION ~added 19AUG2014

SURVIVING THE MASK

RADIATION MASK ADVICE

FIRST DAY OF RADIATION TIPS

PRODUCTS AND TIPS THAT HELP SIDE EFFECTS: 
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PAINKILLER COMPARISON~added 28FEB2015

THE ESSENTIAL KIT FOR HNC PATIENTS DURING TREATMENT

SALT & SODA SWISH and SPIT SOLUTION

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 - UPDATED by fishmanpa 2013

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 SUPERTRACKER

CONTAINS ADVENTURE BOB's TUBE FOOD RECIPE

FOOD for TUBIES

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 ~updated 14DEC2015 - jpg

About Your Neck Dissection Surgery - Memorial Sloan Kettering ~added 14DEC2015 - jpg

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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QUICK REFERENCE GUIDE TO HNC TUMOR STAGING ~added 17AUG2015 - WMC

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. 

Oral Cancer Foundation on Osteoradionecrosis ORN ~added 07MAY2015

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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CANCER SEQUENCE OF TREATMENT
Download contributed by wbcgaruss

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

PHOTO POSTING 101

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

ORN - Osteoradionecrosis

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...

NEGU - Never Ever Give Up ~added 02OCT2015 - JPG 

Comments

  • Stephie75
    Stephie75 Member Posts: 185 Member

    May I ask who can edit this document now? Quite a few of the links are broken, and when I find a link that can replace a broken link, I will PM you. I have found many on this journey so far... Google can be helpful, and not. Smile

    Onward!

    Steph

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member

    Dawn (sweetblood22) and I posted it originally. I helped her as she was inputting everything on her cell phone. I can't remember the specifics, but eventually she took over. We made it read only so that it wouldn't change from others entries, and to keep it pinned to the top. Comments would move it around and eventually it would have gotten lost.

    Unfortunately Dawn passed away a few months ago. Civil Matt is the one most active these days, so you might go through him. I'm sure he could probably go through the site admins to allow him editing ability.

  • Stephie75
    Stephie75 Member Posts: 185 Member


    Skiffin Hey there -

    I did receive a message from a mod regarding that. What I think I will do it send over to Matt first and get his opinion. It may be a better idea if we all took a look at the links and maybe vote if they're worth having them putting them in the place of the dead links.

    I'll get a list compiled to run by Matt, first.

    I was really sad to read about SweetBlood and that I never got the chance to meet her, I read many of her posts.

    Thanks again,

    Steph

This discussion has been closed.