We are having such a hard time!!! No one seems to know wth is going on with his jaw and mouth! He has been to everyone at least once and some docs twice for the same thing. No medications are working and frustration is setting in! He can't open his mouth to fit his tooth brush in and it swelled even more after doing some Popsicle stick exercises that I found on here last night.

All of this started in week 2 of treatment. He is using the feeding tube 100% of the time as he also has painful sores which show up in his mouth when he eats just about anything. Now, he can't even get a spoon in it. :o(

They thought the pain and swelling was due to a tooth issue, but it has been root canal-ed and he was on a round of 15 days of penicillin to knock out any infection. The dental avenue did nothing for his pain and swelling.

He started seeing a Cancer counselor though Banner hospital after his stay with neutropenia. That was an interesting story! She has been wonderful and said something to him that he did not like at out last meeting... "This was his new healthy body..." OMG! This is not healthy and if this is normal for him now.... I doubt he can handle it! :o(

Any words of wisdom?

Mrs. V - I'm so sorry your husband has had such a rough time with his recovery, and I'm sure it was discouraging to hear how this was his new healthy body. My son's experience in recovering from oral cancer was not exactly the same as your husband's, but it did take him quite a while to get to his "new normal" and it was not just a few months but more like a year. You mentioned Banner Hospital and I wonder if it is a Comprehensive Cancer Center. Perhaps someone else on this site will know of it, but until then, you could check out the following links to some of the best hospitals, in case it becomes desirable for you and your husband to get a second opinion.

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

There are some really wonderful people on this forum that will be better able to relate to Tom's experience and I'm sure you will be hearing from them soon. I do hope that there are some much better days ahead for both you and Tom in his recovery.

I looked at the photos and do not know what it is besides an obvious inflammation. Thats one of the downfalls of any online forum, cant diagnose over the internet. My first guess would have been wisdom tooth. Thats how both my son and I looked after the wisdom teeth were removed. Of course it is NOT normal. It could be a very strong infection that penicillian isnt able to take care of. IV antibiotics thru a picc line may be something to ask the doctor about. They should be doing all types of tests to find out what is the cause of the swelling. Something is making it.

Sorry I wasnt able to help you more. I wish your husband all the best with his recovery! He should try rinsing a few times per day with a combo of 16oz warm water, 2 tsp baking soda and 2 tsp salt. If the salt irritates, then decrease it to 1 tsp or if necessary omit it. This should help heal his mouth sores.

He rinses several times a day with the combo, to no avail. He also uses Miracle Mouthwash and Nystatin as they thought it might have been a yeast infection due to the huge amounts of Penicillin they have been giving him. The swelling did not show up until 4 weeks after the wisdom teeth were pulled, at which time a numbness from mid jaw to mid lip proceeded to show up! When he was in with Neutropenia, they gave him 4 different antibiotics, none of which helped! They sent him home after his WBC counts were in low normal range but left so many issues still looming. No one knows!

What about Lymphatic damage done by radiation... Anyone had any experience with the massages?

Vitamin B12 deficiency?

We are grabbing at straws because the docs seem to be clueless! Both Rad Onco and Chemo doc are stumped...

Is this a time to be getting second opinions from other Oncos??

Thanks for any direction you guys can point us in!!

Thanks Anne!! I will be checking out other docs, I just don't want to upset the ones we have! :o(

Any reputable Dr. would not be upset with you for seeking a second opinion. Actually many of the recommend it before you make a decision.