David got Pet/CT and CT results from 8 weeks post today. Good news and bad news. Looks like cancer gone in tonsillar area but lymphnode that was 6.3 cm started only went to 2.4-2.5cm and they are not sure whether to have surgery or not. They then have concern on node on Left which looks active???? They said it could look this way because of still so much healing going on. Also met with Surgeon (ENT) he said they will discuss case over tumor board next week Tuesday. I am concerned with node on left. They focusd so much on the right the Radtion was stronger on the right side and even the last week the did not do any radiation on left.

The RO scheduled another pet/CT 5 weeks from now. We are in Limbo which isnhorrible. The ENT stated that someone would call us after they talk in tumor board. and let us know what they think. The lymph on Right is still large and may have to be removed. But the Left really upsets and scares me that is show some difinetive activity?


I know we have to hang in there but this is so discourageing. David still cannopt take food by mouth his throat still has ulcerations roof of mouth and throat. We really hoped for more definitive outcomes. Sometimes I think the RO just read as he comes in. He seemed flustered. over the results.
Any body else with this?

One good thing is we were given samples of Gelcare for the dry mouth that david has. He tried as soon as we got hom and seemed to help for about an hour and a hal. The Bioteen products help but the are very temporary only about 10 minutes. The Gelcare even helped with his sores...Gave him some rlief.

any feed back would be great...

I don't have much (any) expertise related to your specific case regarding the node on the left. But radiation damage can show up on a PET scan as suspicious. I had a 'false positive' on my PET scan which was 5 months post-treatment. It was worded something like, "moderate FDG accumulation in the area of the original tumor site, concerning for recurrence of the tumor". A biopsy was performed and found that the PET results were just picking up scarred tissues which were still healing. Again that was five full months after finishing treatment. My primary ENT doc told me that's why he waits for 4-6 months to do any PET scans, because the irritated and still healing tissues present the same way as cancer with the radioactive tracer used.

It can be difficult with the doctors and their sometimes seemingly 'rushed' state. So many times I go in with a list of questions, but then what he tells me goes down sort of a different path than what I expected, and my questions don't make as much sense. I end up getting home and thinking of 5 different ones that I wish I'd asked instead!! I'm sorry you're having to deal with this frustration. Just remember you're paying those guys good money - hold them hostage until you get your questions answsered if you can!!

I haven't had much luck with the products for dry mouth either - although I haven't tried Gelcare. The Biotene was very short-lived relief for me as well.

My hopes and prayers are with you in this difficult time of waiting.

-Steve J

Hi there, is Gelcare a prescription? Is it like an artificial saliva product?

Hopes and prayers to you too!

Gelclair (correct spelling)A Bioadherent Oral Gel is by presciption has a licorice taste. They gave us samples. Here is website www.Gelclair.com phone number is 1-877-gelcair.

It is a rinse but can swallow. They told David to swallow some to help with ulcerations still in his throat. It does actually give more moisture and last longer than the Biotene products. It is thick but you thin it out with couple tablespoons of water. David says it really made a difference and really really helps at night when his throat and mouth get so dry from sleeping.

I hope all of you can get samples and try it..

Thank you all for your information I always look forward to everyone responses they help so much..