Superthread (Read only) ~ contributed by Sweetblood22
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
HEAD AND NECK CANCER QUESTIONS AND ANSWERS
SUPPORT FOR PEOPLE WITH ORAL AND HEAD AND NECK CANCER
I JUST FOUND OUT I HAVE CANCER
YOU ARE NOT ALONE. ON ANY GIVEN DAY...
RADIATION SIDE EFFECTS:
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RADIATION FIBROSIS SYNDROME ~updated 17AUG2015
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
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
ARTICLE ON BENEFITS OF GLUTAMINE
ABOUT MAGIC MOUTH WASH or MAGIC SWIZZLE FOR MOUTH PAIN
STRETCHING AND NECK MASSAGE INSTRUCTIONS
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
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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CO BIGELOW LIP BALM moisturizes lips and keeps mouth moister
To PEG or NOT to PEG that is the question:
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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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The above is a great option if you can get it. No long hose attached and lays flat under clothing. Very comfortable.
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.
TRACKING CALORIES AND NUTRIENTS WITH SUPERTRACKER
CONTAINS ADVENTURE BOB's TUBE FOOD RECIPE
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.
HEALTH BENEFITS OF VEGETABLE JUICE
HOW TO ADD WHOLE GRAINS TO YOUR DIET
EASY SLOW COOKER VEGETARIAN DISHES
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.
WHAT IF I CANNOT WORK?:
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DISABILITY AND WORKING GETTING PAID?
CANCER AND THE WORK PLACE:
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Questions and Answers About Cancer in the Workplace and the Americans with Disabilities Act (ADA)
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.
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
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.
Da VINCI SURGERY:
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HPV AND HEAD AND NECK CANCER:
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VACCINATING BOYS WITH GARDASIL
A PDF of HPV AND HEAD AND NECK CANCER
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
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
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
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
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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.
0 -
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
0
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