Keep in touch. Are they doing it soon?

Hi Walter, very sorry to hear this. It must a very worrying time for you. Going back to your comment on yawning, I found yawning very painful for weeks during and after treatment. And I think it also started after the biopsy. I didn't tihnk pain was a typical symtom of a recurrence, if that is what is worrying you. But obviously it will be the biopsy that will give you the answer. I hope you don't have to wait too long. Sally

Well guys and gals, I'm back with not so good news.

My ENT Doctor called and said that the new biopsy pathology showed live cancer cells even after previous treatment 2 months ago.
He has discussed with my Onocology Doctor as well as my Radiation Doctor.
My Radiation Doctor's reflection was to use Brachytherapy.

I'm expecting a call from either my Radiation Doctor or my ENT Doctor to verify the use of Brachytherapy.

I'm wondering how I can qualify for Brachytherapy as a better option than surgery?
I do not want to loose my tongue!
Anybody have experience with Brachytherapy?

You can do a search by putting brachytherapy in the search box towards the upper right of the screen. There have been a few who have had that procedure but its not that common.

Are you being treated at a major cancer center?

I'm so sad to hear this Walter. Are you being treated at a CCC as Christine asked. This is just another example of Erbitux only with radiation maybe not being a great tx option. I pray they can get this figured out. If you aren't at a CCC then please get there.
Keep in touch, please!!
Kathy

Walt,

Sorry to hear this. Were your cells HPV+?

Walt, I too am sorry to read of all this. Where in California are you?

I'm in Los Altos (Silicon Valley) about 40 miles north of San Francisco.

Don't quite remember, but pretty one of the doctors said that the original cancer cells were HPV+

My Radiation Doctor called be and said that "surgery was the way they did things 50 years ago" and he said that he would do everything in his power to help me solve this without surgery.

He recommends brachytherapy and he has talked with the foremost expert, Dr. Jeffrey Demanes who is now at the UCLA Medical Center. (DOES this qualify as a CCC?)
My Radiation Doctor is sending my records to Dr. Demanes.

Apparently they will insert catheters directly into the tumor through my neck to administer high-dose radiation directly into the tumor for several minutes each day for 6-10 days in the hospital at UCLA Medical Center.

Currently they are thinking of treating me with cisplatin before the brachytherapy starts, since the original treatment was with Erbitux and the tumor has not yet been exposed to cisplatin.

Not clear about other options especially to lessen the cisplatin impact/dose.
Likely to be getting a new PET-CT scan next week and *maybe* starting Chemo.

Walt,

I found myself in the same situation as you a few months out of treatment. My original tumor was fairly large 3cm X 1.8cm. Four months after treatment I did a PET that showed a pea sized remnant of cancer. They also saw some residual microscopic disease, which was like a sprinkling of cancer cells throughout the original tumor.

So this is different than a recurrence; this is a situation where the radiation treatment does not completely eradicate the cancer. In my case it was more troubling in that surgery was not an option. In your case it is still troubling because the radiation was not completely effective.

I got four opinions regarding my condition and I would recommend that you get as many opinions as you can before deciding on further treatment. I ended up choosing Cyberknife treatment which gives you higher concentrations of radiation over fewer treatments (50gy of radiation over 5 treatments for Cyberknife as opposed to 70gy of radiation over 33 treatments). My doctors felt this would get even the radiation resistant cells as they would be hit by a bigger blast each time. I did not get an opinion that included brachytherapy but I think they must be thinking along the same lines (radiation source close to the cells).

Either way I recommend you get as many opinions as you can before making a decision, keeping in mind that this is not a recurrence issue but a radiation resistance issue.

Best of luck,

Kelly,

Somehow, your reply and distinction between recurrence and radiation resistance is hartenting.

I do have a contact at Stanford Cancer Center that I got a second opinion back in april. He does nothing else bit this kind of cancer.

I don't want to delay treatment, but I should probably see him.