Walt,

The whole point here is to get it right. Getting those opinions will not take enough time to effect your treatment but may very well effect the rest of your life by giving you options that are best for you.

By the way, don't limit yourself to your state if your insurance gives you any latitude. If the best treatment is out of your area it is still the best treatment. You have a very narrow number of options here so you will not have that many places to go. Just try and make sure you cover all of them the best you can.

I'm not clear on how to identify the *best* treatment.

I'm pretty subjective about removing my tongue, but that *could* be the best treatment.

This is always a tough call. All we can do is search for the best options available out there and then go and see the folks who are presenting them. The "best" option is the one you feel is best for you.

I know that the options I chose were very clear to me after hearing what the various institutions had to say. Ater it is all said and done this almost always comes down to a gut call.

Get multiple opinions and see if that becomes clearer.

I have a friend that beat this a little over 10 years ago.
He was treated at MD Anderson in Huston and he has put me in-touch with them.
They now have my pathology report faxed and insurance cards and signed documents pdf'ed and emailed.
They acknowledged receipt saying I should be hearing from their Head and Neck Center soon.

PET/CT Scan tomorrow!

I'm locally scheduled to have a Med Port installed on Tuesday AM and they will admit me probable Tuesday or Wednesday to start TPF chemo:
Docetaxel(Taxotere) 75mg/m2 iv over 1 hour d1
Cisplatin (CDPP) 75 mg/m2 iv over 1 hour d1
5-FU 750 mg/m2/d civi d1-4
Repeating every 3-4 weeks.

Major chemo Walt. This is what Kevin had too. It was very rough and he was 54 and in perfect health other than the obvious.
I'm not saying I wouldn't do it, but just know it will be harsh. STAY HYDRATED!! Cannot stress this enough. Go in for fluids daily if you need to. Even if it's to the ER. That's what some of our friends have done lately.
Kevin and I had a bp kit at home. If his bp went below 108/60, we went for fluids. It's an easy way to tell if you're getting dehydrated.
You have someone going with you to your appts, right?
WIll be praying Walt. Please continue to reach out to us as we will be watching for updates.
Blessings,
Kathy

Congrats on your negative PET scan. I just finished treatments not too long ago Sept 26th. Do they usually wait 3 months or 6 months to do the PET scan after treatments. I do have a follow up appointment on the 6th of Nov but I think they are just going to scope me again.

Thanks Kathy.

This morning they did a PET/CT scan and the tumor is there, but has not spread.

My ENT Doctor wants to remove my tongue.
My Radiology Doctor has performed Brachytherapy and since he has not performed one in several years, he highly recommends Dr. Demanes at the UCLA Medical Center. He has FedX'd (Overnight)the PET-CT scan to Dr. Demanes and he previously sent the other records and Pathology reports.

They will each be at a Radiology conference in Boston next week. So, it possible Dr. Demanes might not have time to review until the later part of next week. My Radiology Doctor will try to see Dr. Demanes at the conference.

The description that my Doctor provided on Brachytherapy sounds impressive:
X-Ray image to guide insertion of catheters to the edge of the tumor and software controlled treatments with machine inserted radiation wire inserted into each catheter for a given amount of time.

Won't know if I'm approved for the treatment until Dr. Demanes review and contacts me.

Good news that it hasn't spread.
Hate the stinking waiting game!! They want to remove your whole tongue?
Kathy

Yes, the ENT doc especially!