Dkatsmeow

Dkatsmeow (cool name) - In year 5 after treatment, I noticed a nagging pain in my radiation lower jaw and a little swelling - more than was there before. I was followed by my Onc doctor and watched as my Alkaline Phosphate kept rising. In Jan 2017 - 6 year after treatment at a routine dental appointment, they found back 2 teeth on bottom the gums were infected (no pain because of numbness) so this started a 6 month process of HBO treatment, removal of back 2 teeth and then determined I had ORN after the gum site never healed and bone started showing. I had loss of 60% of mandible. In July 2017 I had a fibular to mandible free flap transplant - took fibula and made a new lower jaw. It was a very hard surgery and set me back a bit but thankfully the transplant took. I have to eat only on the right side now, luckily I can still eat some things (dysphasia of course) - so I count it all joy that I came through. My latest challenge has been in 2018 - my teeth began failing and I've had 6 + months of dental work. So hard on the pocket book and on my jaws since I can only open 2 fingers. Only a small percentage of Head an Neck radiated people get ORN but it is always better to know the signs and symptoms. Bless you

Thanks again for helping others on the site by sharing your own personal experiences and answering their questions. Newly diagnosed members find it comforting to know that others have been where they are at and have made it through and been able to move on with life. We appreciate you!

I noticed you posted this on David's wall, I'm pretty sure you posted by mistake on his wall instead of someone elses. It's easy to do, I'm not sure where this was supposed to go, but maybe you will remember who you were trying to talk to. This is the comment:

Good luck & let me know how it goes. I am south of you down here in Dinwiddie, VA! Definitely get you teeth checked out real good or removed if possible.

Hi. How are you? 2015 was your last attack? How many attacks had there been? Think Edgar Allen Poe and his "The Raven" which quoth "Nevermore"

Hugs & best wishes.

You have a great sense of humor. I do understand the darkness.

I know how you feel, I am a puker. And when I am depressed, I puke a lot. Can you get your PCP to refer you to a counselor for your depression. A psychologist could prescribe non-addictive medications for your depression. I also saw a psychologist who was a certified medical hypnotist for pain management after a automobile accident. It really worked for me. Thankfully there was a medical hypnotist available for me when I had cancer.
Prayers and best wishes for your relief,

Hey Meow you mentioned the current political atmosphere having a bearing on cancer. My heart went out to Senator McCain after the vile remarks, Donald Trump made about him last night. He did not mention McCain by name but it was totally obvious who he was talking about. I can't imagine going thru Chemo and hearing those words. Beyond belief

Another possibility is esophageal dilatation. Sometimes when a patient has problems swallowing, the doctor can perform a procedure similar to an endoscopy where they perform a procedure to stretch the esophagus. My ent told me after my endoscopy that he saw no restrictions.

Has anyone offered you an opportunity to have "swallow therapy"? An acquaintance who is a physical therapist in Fort Lauderdale, Mary Ann Towne thought it up. I hear very good things about it. Best wishes

Darn- I decided to follow you and lost my message. Uugh!

Potatoes and sweet potatoes are about the only plant foods that will help you to put on weight-easy on the mouth throat. Sweet potatoes-fresh can be baked whole or boiled and mashed. You can just about drink them. Don't forget to add dry powdered milk to anything liquid to have max protein. I added it to cream soups, gravy, mashed sweet potatoes. The dieticians here are vegans and it's almost like a religion. I was told to gain 5 to 15 lbs in less than 3 weeks-make it protein and iron. My stomach can't handle those protein drinks, so I was wolfing down rare steaks, cheese and crackers, deviled eggs, scrambled eggs with cheddar cheese and milk powder and some whole milk, tuna egg sandwiches-but I got 10 on- and even gained 2 more pounds. I still do lots of this.

People say-- Cholesterol-- I'm thinking -how dumb- if you die from starvation during treatment- you don't need to worry about cholesterol. Wed I met a 45 year old man that lost 110 lbs- weighs 85 now.

I had the swallow test done. What I learned from it has helped me in many ways. They teach you how to swallow when something is hard to get down. It has help me with large sized pills. The position of your neck can make swallowing much easier. I highly recommend it. Greg I can understand your insurance issues but I think they would have paid. It's a very important part of your health care. I would still do it if you can.

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/head-neck-throat-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Follow Us on Twitter Click Here =>http://bit.ly/XExkce
Find Us on Facebook Click Here =>http://on.fb.me/zjBAPl
Our Pinterest Page with Resources=>http://bit.ly/12qVtEs
Our Help Page with instructions for the site->http://bit.ly/1aR5165
GregP 3X Survivor
Team WhatNext Community Mgr

Dkatsmeow, hello. As GregP asked, what is going on with you. I recently joined this site, too. You have come to a good place. Wishing you the best.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter