Hi Karen,
I wish I could give you an answer but I'm at the limits of my knowledge. It's a very good question. If you talk to them let me know the outcome. I have spoken with the public affairs person at Loma Linda to obtain permission to use some of their material and pictures on the site. The next time I speak with her I'll see if she can answer that question.

The only 2 centers currently open for PBT is Loma Linda UMC and the Northeast Proton Therapy Center at Massachusetts.

Maybe you can arrange to have the docs review your case at the closest PBT facility.

I just found this on an FAQ for PBT
http://www.proton-therapy.org/questions.htm

Can proton therapy be used in conjunction with other forms of cancer treatment?

Yes. Depending on the case, proton therapy may be used in combination with traditional radiation, chemotherapy and/or as a follow-up to surgery.

My doctor never mentioned proton therapy as a cancer treatment option? How long has proton therapy been in use for medical purposes?

Proton Therapy was first proposed in 1954, but primarily had been available for very limited use. There was no hospital-based treatment centers in the world until the Proton Treatment Center opened in 1990 at Loma Linda University Medical Center. Most radiation oncologists know about proton therapy, but have not had experience working with the proton technology, making it difficult for them to advise patients on this form of treatment.

Thanks Gary, I will persue this and of coarse let you and the board know what I find out. We leave fot Madison today. 2 hour drive... Surgery 7:30 AM tomorrow. I probably wont get back to the board until Wednesday if all is going well. We have a head clinical nurse down there that has been phenominal. I will ask her to help me explore this option. Right now I have to turn my thoughts to NOW. Face my fears and be strong for Don. Of all of it, can you believe it's the trach that scares the hell out of me. Coughing while he is in pain, the feeling of not being able to breathe, not being able to communicate... The CT scans showed some emphasema (sp?)that I guess is of "NO" concern right now. Thanks everyone for sharing your information, thoughts and of coarse prayers. We'll MAKE IT!

Hi, I had surgery, femur flap and tissue. Lost jaw bone and floor of mouth. My flap failed, which is rare, and I had to have the bottom of my face rebuilt.Radiation had to be put off and rebuilt a long process, so I never had radiation. My Doctor was not happy with this he believes in full rad, but choices had to be made. I am telling you this so you know surgery can remove a large tumor and there is a great deal of hope. I have been cancer free for 3 1/2 years! Leg great, wrist from that flap bothers me a little if i lift too much with it. You have lots of hope!

If anyone come back to this thread< you can get a wonderful update on Don at the bottom of "unexpected bad news" don't let the thread name scare ya-In "Symtoms and diagnosis"