Connect
Meet others living with Head & Neck Cancer: Introduce yourself
Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.
As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.
Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
Hello @crboggs3 and @trte300.
As our moderator has stated, this is a great place to be, and yet it isn't...No one wants to have cancer, right? My cancer was in the throat--Pyriform Sinus--near the vocal cords. A mild sore throat began turning into an earache on the same side, then the pain worsened. After many misdiagnoses, a University Doctor finally got it right. That was in 2018, so it has been a few years now. At age 64, they say the cancer is gone, yet that fear is always there. I sincerely hope and pray that all goes well with you both. You are in the right place.
-
Like -
Helpful -
Hug
2 ReactionsHi. I just finished 28 sessions of radiation on September 18th. I had a tumor that had grown on my left vocal cord. As I was finishing my treatments, I lost my voice, couldn’t swallow solid foods, and I was coughing up blood and pieces of flesh. My surgeon saw me on 9/28, and told me the tumor was gone, but much healing had to take place. Since then, my voice has come back, I can eat anything, and the sore throat has subsided. One thing I think that helped me make a good recovery was going to the gym every day, even during the treatments. There is still a road to hoe, but everything seems encouraging.
-
Like -
Helpful -
Hug
2 ReactionsHi! I have a family member who recently had an area of squamous cell carcinoma removed from her tongue. She is starting 6 weeks of radiation therapy soon and I would appreciate any feedback on options to keep her mouth hydrated -any particular rinses or lozenges? Also options for pain and fluoride treatments to keep the teeth strong from radiation exposure. Thank you so much! So appreciated! Al
-
Like -
Helpful -
Hug
2 ReactionsHello @ally3 welcome to the head and neck cancer group.
You will find many posts within this group dealing with mouth and tongue pain. In addition, others may jump in here with advice.
Me, I am old school with warm salt water rinses and perhaps Orajell or similar over the counter ointments.
Tongue pain in particular is brutal as the tongue is so very sensitive to every little thing in the mouth.
Best of luck keeping your family member at ease through all this as it progresses. Maybe keep some cold water and ice chips handy as a quick pain relief which although very temporary does add some sunshine to the lamentable days ahead.
Is she getting radiotherapy from someone with experience in oral cancers? It’s important.
-
Like -
Helpful -
Hug
1 ReactionHello @ally3. After reading your question, I had to search my memory banks for the products I used after being treated with radiation for cancer of the Pyriform Sinus, which is near the vocal cords. There a quite a few products that proclaim to relieve dry mouth. One great produce is XyliMelts.
The following is the online definition of this product from AI: "These oral-adhering discs stick to your teeth or gums to relieve persistent dry mouth. They are made of saliva substitutes that mimic the properties and functions of natural saliva, such as lubricating, moisturizing, and protecting the mouth. XyliMelts can be used during the day or while sleeping and may help with symptoms such as frequent thirst, sticky dryness, or discomfort in the mouth or throat. XyliMelts are also sugar-free and contain xylitol, a natural sweetener that may prevent tooth decay and plaque."
I kept water around constantly the first few years after radiation. Please tell your family member that time usually helps a great deal. She may even forget the products she used to help relieve the dryness! It may take a few years, & hopefully she will return to some form of normalcy. Best Wishes.
-
Like -
Helpful -
Hug
1 ReactionHi @thomason,
You are so kind, thank you so much for your suggestions. I will share the xyli melts info with her- they sound wonderful!! This has been a rough road so far, and about to get worse as both sides of her neck will be radiated. Your info is greatly appreciated!! Thank you so much and have a beautiful Sunday!Al
Hello @hrhwilliam
Thank you for your warm welcome to the group. Thanks too for your ideas, the ice chips were a great idea!! She will be having radiation treatments through MSK here in NJ- she had her surgery through them as well, they are fantastic. I appreciate the time you took to respond William, thank you so much!! Have a wonderful day!! Al
-
Like -
Helpful -
Hug
1 ReactionHello,
As for me XyliMelts did not work. In fact they made my mouth feel gummy like so I stopped using them.
But, if they work for your family member then great!
I live near a dental hygienist school which is where I purchased my XyliMelts at a very fair price if that’s an option for you?
I personally found the hot water rinses along with sipping and hacking first thing in the morning and several times throughout the day and even through the night at times works best for me. I follow that up with brushing with toothpaste and also with prescription fluoride toothpaste ($20.00) as well. I also pay for fluoride treatments every 6 months during my dental cleaning and check up.
The dry mouth is a very annoying situation. I carry a bottle of water when I’m out and about as well. Talking is a huge dryness onset for me.
Your family member will most likely experience difficulties in swallowing food as well.
What works for me is water, lots of water to wash down every small bite…been doing all of the above for nearly 7 years!
Oh and BTW, speech therapy did nothing for me except cost money!
Hope this helps,
MOJO
-
Like -
Helpful -
Hug
2 ReactionsHow are you doing, Charles? When will you start immunotherapy?
Hello MOJO,
Thank you so much for your feedback, it’s greatly appreciated!! I will pass it on to my family member, thanks. Have a great day!
Al