Hello New Friends!

My name is Cindy. I attended my first OCF event back in March & it was a blessing to meet those “walking in my shoes.” I’m looking forward to being a part of this forum to learn more about the best care possible, meeting more online friends.
I was diagnosed with squamous cell carcinoma on left side of tongue in 1999 (surgery to remove). It came back in 2014 ( stage 4, making surgery with graft, chemo & radiation a must).
I have lost 2 teeth (# 18 in 2017 & # 19 this month).
I’ve joined the forum to learn ways to help with prevention of future loss of teeth as well as getting ideas from y’all about oral hygiene when I have this large empty space (lower jaw, left side).
My oral surgeon did not put me on antibiotics when he pulled my tooth. He gave me chlorahexidine (peridex) mouth rinse.
How do you keep this deep hole clean? Does that sound normal?
I currently use a water pic (not on healing tissue), mouthwash, sonic toothbrush, and I clean with soft toothpicks between teeth.
Truthfully, I’m planning to attend SPOHNC meeting (first time)next Thursday because I may need a new Oral surgeon & Periodontist. I don’t trust that my current providers are doing all they can to help. I feel like they’re just watching it “go down.”
I did have 40 sessions of HBO 2 years ago & they claim, that is all they can do.
I’ll post this on other (more appropriate?) forums, but just saying hi & letting you know why it took me so long to get to this wonderful site.

Before I end, just letting y’all know that as I read y’all’s posts in general, I’m inspired. We are stronger together! Hope Anchors the Soul!

Welcome Cindy!

You’ve been through the ringer, and sure others can learn from your experiences too! I’m sure others may be on here soon to offer you their advice!

I know how it is as far as teeth go! I had problems a year after radiation, and slowly jadvteeth problems and loss. The problem too was I was going through cancer treatment so there wasn’t much to do. I’ve been through HBOT twice. My doctors didn’t think it could help my ORN either, so one day they pulled all 29 during surgery, and later on had ORN jaw replacement.

You need impeccable oral care! I haven’t heard you using a prescription fluoride? That is a must!!

I’m sure there is a way to fill in the tooth gap? Maybe changing doctors may help and or to get a 2nd or 3td opinion! Being on Medicare, there is no heath insurance for mouth care, and vision care, although I see a pptimoAfter healing, which was a year, I had a jaw replacement, then a year later, a heart attack, and now in a rehab nursing home, so each year I had no teeth

Hi Paul,

Thank you for sharing your story. You are a trooper! I am always inspired to hear what others have overcome.
I do use a fluoride gel, thank you for sharing & I also plan to get opinions. I struggle with knowing where to go but hopefully my SPOHNC friends can help too!
In the past, I’ve have providers reassure me that “they have experience working with situations like mine,” but deep down, they were too wishy washy ( and gave bad advice) for me to trust them.
I’m grateful we have online communication with community to help.
Blessings to you! I’m sorry you have lost your teeth & dealt with a heart heart.
Thank you for responding. I know you are in inspiration to others in your rehab home. I’m a PT & the people I work with inspire me daily. Keep working! 👍⚓️🙏🏻

Cindy,
My husband was given a syringe with a curved tip to clean out the deep depression left after dental extraction. We received misinformation from several dentists & oral surgeons regarding failing teeth, extractions and after care involved. It was very frustrating and scary.

It was not until my husband consulted with an oral surgeon on a Head & Neck Oral Cancer Team in New York City that he received competent care. Can you consult with a large cancer team to find out which dentists/oral surgeon they recommend? I have several posts regarding dental and ORN issues that you can check for more details.
Travelottie

Oh, thank you, Travelottie!
At the current time, I’m seeing a team ( oral surgeon & Periodontist) that my ENT (I’ve followed him the entire 20 years of my journey) recommended ( just because neither one of us knew a better way & I have not had issues until now).
However, I’m going to continue to search for a team as you have mentioned.
I will look for your posts! Thank you so very much! I assume I just click your name & read what you’ve written? ( I’m new to this blogging stuff).
Again, the syringe is a great idea, & I'm going to learn a lot from you.
Yippee!

Later this week I can try to pm (private message) some of my past relevant posts to you. I want you to know that in the end the outcome for my husband was better than expected.

Welcome to OCF, Cindy! Its always great to have another survivor join our online family

You mentioned attending an OCF event in March. Was this in San Antonio, hosted by Elizabeth? If so, shes one of my dearest friends Ive had the pleasure to meet thru OCF, also Beverly and Ed are a couple of the great survivors Ive met there too. Ive attended both the San Antonio and the Houston events as their speaker a few years ago. Every single person Ive met over the past 12 years thru the OCF events have been awesome!!!!

Im sorry to read what you've been thru!!! None of this is easy on any of us. We all just pull ourselves up and do the best we can to get thru some of our hardest days.

You've done HBO! Ive been thru far toooo many HBO dives over several different times!!! I detest going thru HBO with how much of the day it takes, but I love the healing effects it has. While I am laying in that glass tube, I stress myself out thinking of everything I should be doing instead of just laying there and how far behind Im getting from doing the half day HBO.

Im sure you will have lots of different experiences that can help those just starting out. Amazing how much info we all learn after going thru the things we have to eliminate the cancer. Just learning the medical jargon alone was a huge learning curve for me! Oh well, it takes a village...

Have a great day!!!

PS... To pick up frequently asked questions/answers new members frequently need help with or ask about go to the very first sections (START HERE... New Posters Read This First) first post titled Posting Etiquette . This thread was created to help new members to settle in and after just a few posts most are feeling comfortable navigating the forum.