Gary, he didn't have radiation, unless the Photodynamic Therapy would be considered radiation, although it is a light applied to an area after being infused with a light sensitive drug being taken the day before. So, I think the problem is that the area is healing and very open and this would just lead another open path for infection?

We will see the surgeon Thursday for our January 1 month visit. He will make the determination whether to pull the tooth or leave it. It is very painful to Tom and right now, he is on antibiodics.

Evidentally, the PDT can also affects the teeth and a dentist from the trial team is there during the procedure to protect them.

You know, seems that one thing leads to another and another - like you can't just have something clear up without another phase to it.

Life and cancer are not simple, are they.

Gary, you are a wealth of information and I thank you. I thank All on this forum, and you are all wonderful and very kind.

We will read all the things you have linked for us.

It is funny, some days, I don't want to know anything - and other days, I want to know it all. Like the ostrich in the sand - maybe it will go away.

The other side of it, at least for me, is if I don't know, I can think good thoughts and have hope. Sometimes if I read one little thing that is not good - even if it is a rare thing that doesn't often happen, it will put me in a slump.

Anyhow, overall, I still feel knowledge is a good thing and you have to be your own advocate and to do that, you have to have the information.

The Stage of this tumor is somewhat confusing.

The oral surgeon/MD, who we originally were sent to Nov. 1 for a biopsy - this right from the dental hygienst chair - told our dentist he felt it was a Stage 2.

From reading, a Stage 2 indicates Lymph node involvement and he doesn't have that, was tested two times - the latest the day of the procedure. Although they had talked of taking the sentinal node.

We realized that the PDT will only be successful at a certain depth - which is Stage 1 tumor and to a certain depth that the light can get to.

When we were in recovery waiting room, we were told the tumor was deeper than they thought and might have to be re-done in March. This is when he will have a biopsy done, the three month appointment.

I was not feeling too optomistic after hearing that, and my sister in law was with me and heard it too.

The question would be as it is a Clinical trial and has to meet certain parameters, and he did,so maybe the Oral Surgeon was thinking it looked larger?

However, since the tumor was deeper than they thought, does that mean it was a Stage 2? Could it have grown deeper since the biopsy done in November - the PDT was done December 8th.

Seems that Stage 2 has two descriptons - one involving size/depth and one regarding lymph nodes.

I am sorry to hear of your sweet dogs, always in your heart.

Gary - Just as an aside to this thread and your mention of having nose bleeds since age 6, I too, had nosebleeds since around age 5 which were profuse and lasting an hour or more until the age of 20 when I had the veins in my nose cauterized. The Doctor explained that the veins in my nose were too close to the surface of the skin and that even the slightest trauma to the area (blowing the nose, etc.) could cause the bleeding. After the cauterization, no more nose bleeds.

Has anyone had experience with Trismus - or where you cannot open your jaw very wide? Thanks alot - Darbi

A lot of us have this issue. I still do and the doctors don't think it will get any better. I was given a therabite which is a device used to help stretch the mouth and there are other excercises that different ones have used. The important thing is to do some form of excercise and definately keep it monitored so it doesn't get worse. I can just barely get two fingers in my mouth now. Is he doing regular excercises?

Sharon

Darbi

Look at the upper right hand of your screen. There is a Search box. type in Trimus and all the prior posts on this will pop up. I'm still using a Therabite 3 years after DX and it keeps my trismus down to about 27 mm. Rule of thumb: if you can't fit three fingers in easily, you have trismus.
Charm

Thanks, Charm2017,

I forgot about the Search feature thank you.

Nothing was said about exercising your jaw after your procedure that I remember.

I'll have to look into the Therabite - maybe on Amazon. He was finally told to use the popcycle sticks when he brought it up at an appointment 2 weeks ago.

They did an MRI a week ago - as he has a small hard lump in the area of the trimingle nerve. He felt it and the doctor sent for the MRI - with contrast dye. We will meet with him in 2 weeks to go over the results of that.

It just is so much, and some days you feel better than others.
Guess that's true of everyone in this forum - Bless you All, you are wonderful - supportive and caring.