Hi we are still all in shock!!!and scared....what does this mean? I have always said learning and educating ourselves on head and neck cancer helps us fight. I cannot find any real information on this.

If anyone may have some advice or information I would greatly appreciate it.

He just got cheo port put in Friday starts chemo this week. He can not really talk he must be so frustrated not to be able to really voice his feeling. He has always been "the glass is half full" type of guy. I have never seen him like this it is heartbreaking. Our kids 20 and 16 have been so strong helping their dad, they seem defeated.

I am so lost and scared.... we need HOPE.. or information the unknown is what is so scary. Can Cheo at this point help him??? or just make him sicker and sicker...we just want him to have some sort of better quality of life then what he has right now.....

Thank you for reading this any advice, information would be greatly appreciated...

Cathy, welcome to OCF! Im so glad you have joined our group. We will do our very best to help you and your husband.

The best advice I can give you is to find the best medical professionals you can and go with their treatment plan. If you can go to a Comprehensive Cancer Center (CCC) that should be your first choice for getting help for your husband. A CCC uses a team based approach so all professionals work on each individual case together to form a treatment plan. The CCCs may also may have a clinical trial that would help your husband. Chemo alone may be used to help shrink the tumor, but it will not completely eliminate it.

To help your husband communicate, try an app called Speak It. Its available on ipads. I had a friend who was unable to speak and she was a wiz with the Speak It. Your husband would type what he wanted to say and the app say it out loud. The app makes using the phone an option for people who dont have a voice anymore.

At the treatment facility are you able to ask about what family programs they offer for their cancer patients. The stress put not just on the patient but also everyone in their household when battling cancer can be overwhelming. Many patients take anxiety meds, quite a few caregivers do as well. Your family would benefit from talking with a therapist who is experienced with how cancer affects the entire family not just the patient. Many people avoid seeking out a therapist even though it would help them tremendously.

I hope this has helped. Best wishes with everything!


PS... Take some time and read thru the main OCF webpages. You will find so much info about oral cancer and everything that goes along with it including info about chemo and mets. By educating yourself you will become a stronger advocate for your husband.

Main Oral Cancer Foundations website

Thank you Christine,

I am looking into therapy to help our girls and am still waiting on his ins to give him an out of network approval for the ccc that he had 8 years ago. The ccc has been very helpful and are so thoughtful calling me with updates on his approval.

I will look into speak it that might be very helpful if he is up for trying this.

I spoke to you on the phone in the past in regard to his eating before he got the peg and the canned peaches was a great suggestion for him. At that point he could eat them and I am hoping one day he can do that again.

I will ask them about clinical trials I know nothing about them but maybe they can give us a way to make him more comfortable.

Thank you so much for your response it is greatly appreciated!!

Im so glad you joined our group!!! I talk on the phone to so many people every week its hard to keep track of everyone.

Here is the list of easy to eat foods for when your husband is ready to eat. Be careful not to rush this as he could aspirate where the food goes into his lungs instead of his stomach. A barium swallow test will determine what his eating capability is.

List of Easy to Eat Foods


Good luck with everything!