Hi all --

It's been a while since we posted -- Barry is now 10 weeks from the end of his treatment and continuing to progress well. He's had post-treatment follow-up exams by his outside ENT surgeon, his RO at Hopkins and today, a Hopkins surgeon. All said everything looked good (in fact, today the surgeon said "excellent") -- the caveat is that these are only physical exams and Hopkins waits until three months out to do a PET/CT scan. Before that they are concerned with false positives due to inflammation. This is scheduled for the 29th so we will of course have to keep fingers and toes crossed until then. If the scan is clear, he will most probably enter a new HPV-16 vaccine trial early in 2006. If the scans are not clear, options vary from re-scanning in a month to doing surgery immediately. Guess we will cross that bridge if we get to it.

Meeting with his swallowing therapist next Monday to gauge progress -- Barry is eating a lot more variety of foods, including baked chicken, sausage, hash etc. but still nothing really dry, crisp or spicy. That will come in time we hope. His taste is pretty much back to normal with some odd exceptions -- like he doesn't like the taste of cheesecake now.

Still doing swallowing exercises (these are getting easier but not all that quickly so still some healing to take place) and the TheraBite. Will also see the dental onc a the end of December for next follow-up (mostly to check teeth and also, salivary function).

Hope everyone has a good holiday, and best wishes for 2006...

Gail and Barry

Sounds like things are looking up for you guys. Keep up the good work!
I sincerely hope for 2006 to be a better year for all of us!!

Andrea

Good news Gail and Barry!
I just know that PET/CT is going to give you a positive healthy result.... I say that as though I never stressed over them !
We have another one before the end of this year also, and as time goes on it does get a wee bit easier.

Take Care
Marica

Barry, so sorry about the cheesecake! I hope that comes back. Sounds great Barry and Gail.

For what it is worth, my ENT feels that PET scans have too high a false positive rate at any time. Several past regulars here experienced the stress of a false positive PET. It seems that a false Negitive is rare so you can wonder what is better to know.

Hi Mark --

The surgeon we met with had about the same thing to say about PET/CT -- he said that "at first everyone was gung ho that this was "the answer" to determining whether there was any cancer left but since then we have found that it is not as perfect as we had hoped." However he added that the PET/CT was still much better than the earlier PET alone, but that so much depends on this ability of the radiologist to correctly interpret what is seen. He (the surgeon) had in fact done neck dissections based on positive scans and no cancer was found, so a lot of misery for no reason. He went on to say that it (PET/CT) is used at Hopkins as part of the evaluation procedure, not the whole cloth.

Barry then asked, well, what if there is a positive result? He answered, if the tongue "lights up" (recall Barry had a residual BOT tumor after his primary tonsil tumor was resected) we will do a biopsy right away. That's pretty straight-forward. If one of the nodes, Barry has a choice -- wait and re-do the scan (probably with an MRI as well) a month later or have surgery. I asked about needle biopsy in this case and he said that it can't be done during the scan, so afterwards becomes too much of a "hunt and peck" as to whether he is sampling the same "hot" area.

Well, let's hope it comes back negative and this is all a non-issue. Barry told the surgeon he just wants to "get on" with his life. Anyway. all three of his physical exams so far have been very favorable, especially as regards the BOT, so Barry and his doctors are all very encouraging.

We are off to Mexico in January, hell or high water, need a break!!

Still, fingers and toes are crossed!

Gail and Barry

A properly administered and read PET scan is an excellent tool to locate metastases. While it is true that they don't do very well treating distant Mets, they do have some success. It is a matter of how much information you can deal with. You want to have cancer sneak up and kill you, or do you want to know about it and fight.

Gail and Barry, Enjoy Mexico! You've both certainly earned the vacation. Keeping everything crossed the scans come out clean (it sounds very hopeful that they will). Nelie