I think my husband was trying to protect me and didn't tell me what the ENT had said prior to surgery. He did have a CT Scan with Contrast (I think) prior to surgery and the ENT Surgeon searched up in his head and in his throat for any signs of cancer during the lymph node removal.

His nausea has stopped the last few days but he has also missed many RT's over the past 2 weeks. I am not aware of a dietician.
His weight has stabilized since he left the hospital.

Thank you for all of your help. My husband thinks he is doing Preventive RT only and the cancer is gone. I think the doctors have gone too far in reassuring him that it is all great. He doesn't read this forum or anything about this. If I told him that it could be related to BOT he wouldn't even know what I was talking about.

If you're still searching for some relief to oral Mucositis, then try a mouthwash called 'Caphosol'.
Having got the box and info. leaflet in front of me,I'm sure it's available in the States. Over here it's produced by EUSA Pharma (Europe) Ltd, Oxford,England,UK. However, the box does contain a depiction of a map of Europe in addition to North America, so you should be able to track it down.
I have had 6 weeks of chemo/ radio last year, and then 18 weeks of chemo this year, so all of the previous posts on this topic are familiar to me. Caphosol will not wipe out the mocositis, but it certainly alleviated mine. It was recommended at a private 2nd opinion I had at a regional Cancer specialist unit. My primary Oncologist didn't seem to know about this product and it had to be specifically ordered.
We all get fed the line that we're all different and respond in different ways ( etc etc ad infinitum) ,but it's worth a try.

Paul,

Thanks for that info.

I also would not recommend not radiating an occult primary "area" and that's the problem as the radiation field must be expanded and the rads spread out more evenly than desired.

Stacey, I agree with trying to get a dietician involved. they can be very helpful. They are full of all kinds of ideas to help get a balanced diet when the patient have eating challenges. My dietician helped me greatly and stayed in close contact with me thru out all my treatments. She even would pop in to check on me whenever I was hospitalized, even 5 years later.

One thing that is very helpful to patients is to take another set of ears with them to their appointments. Patients dont always remember to ask certain questions and then they can also forget the answers. I know you have gone to some appointments with your husband, try to go to them all if possible. Another way to help educate your patient is to print out pages from the forum and casually leave them laying someplace so you can read them later. Of course this would be someplace the patient could pick them up without being noticed and the patient can check out the forum indirectly.

Best wishes with everything!

PaulB,

We met with the RO today and I asked if they were treating the area that they suspected was the initial Primary area. You were right. He said the suspected area is tonsil or BOT and they are treating that area too.

I also asked if this was prevention treatment as my husband thinks and the RO said absolutely not. He told my husband that his prognosis without RT would be poor.

He finally said that he would put a PEG in place if it became necessary. They had a very difficult time with IV fluids (3 people tried) because he is so dehydrated.

Thanks to all of you on this board and in this forum for your help and guidance. This means the world to me.

You are welcome, it was a team effort, and glad you got some answers. I wish the best for the rest of his treatment, and a speedy recovery. Happy holidays