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???? The 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. I am concerned with node on left. The focusd so much on the right the Radtion was stroner 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...

Radiation to the H&N is not without side effects. If he finished 6/22 though, he should be long over any ulcerations by now. Why hasn't the RO treated him for this? Liquid Vicodin, Miracle mouthwash, whatever, etc., it can and should be dealt with.

Dry mouth is the new normal, get used to it. It may get better over time if the RO had the ability to spare a parotid saliva gland, but that will take a year, at least.

Things will not be the way they were, ever.

If David still has active tumour showing on his scan then further treatment shoudnt be open for discussion it should be happening now.Dont let indecisiveness cause delays .Yell loud and hard now!

The problem is that lots of things can look like active cancer -- and sometimes it IS active cancer. However infection, inflammation, healing, scarring etc. also will cause uptake of the radioactive tracer and a cautious radiologist will not want to say it is NOT cancer!

Thus the second PET/CT. At many centers, including Hopkins and I believe Sloan, the standard protocol is a PET/CT at 3 months -- 8 weeks is considered early and too subject to "false positives" -- then a second at 6 months, A suspicious scan might prompt an MRI or even a biopsy if the area were easily accessible. Obviously residual active cancer requires further action which would be surgery, but the doctors want to be as sure of this as they can be.

On another tack, has David been tested for human papilloma virus? The majority of tonsillar cancers seem to be due to this factor and this has a better prognosis and response to treatment than the cancer of smokers. If your center doesn't do it, Hopkins can.

Gail

Gail,

We are going to Moffitt cancer center in Tampa and they have stated since very beginning the his cancer is probably HPV based. He has NO HX of Smoking at all and NO drinking. (Occasional 3 times a year of wine) but no pattern at all. They stated they sent his samples to lab yet have had problems with lab and still do not have results. He finished TX 6/22. How and who do we contact to get this testing done. Would be interesting if we did it ourselves through John Hopkins and they still tell us they are waiting. WE have been frustrated by this. Just your overall mentality is different when there is ahigher success rate documented if it is HPV based.

The ENT agreed with RO. The node on right which is still 2.4-2.5 will more than likely be removed. The node on the left which appreared still active will hopefully show otherwise on 9/17. We are scheduled for another PET/CT on 9/17 get results on 24th. David still has ulcerations in the back of his throat and roof of mouth and he is still definetly healing from all this. The ENT agreed with RO and we also had followup with Chemo doc who also agreed. His case will be discussed at Tumor Board on Tusday and they are supposed to call Tuesday or WEdnesday. Probably won't change think they have all already decided. We will be patient and hope it is OK as opposed to surgery on the left as well as right.

Gail,

We are going to Moffitt cancer center in Tampa and they have stated since very beginning the his cancer is probably HPV based. He has NO HX of Smoking at all and NO drinking. (Occasional 3 times a year of wine) but no pattern at all. They stated they sent his samples to lab yet have had problems with lab and still do not have results. He finished TX 6/22. How and who do we contact to get this testing done. Would be interesting if we did it ourselves through John Hopkins and they still tell us they are waiting. WE have been frustrated by this. Just your overall mentality is different when there is ahigher success rate documented if it is HPV based.

The ENT agreed with RO. The node on right which is still 2.4-2.5 will more than likely be removed. The node on the left which appreared still active will hopefully show otherwise on 9/17. We are scheduled for another PET/CT on 9/17 get results on 24th. David still has ulcerations in the back of his throat and roof of mouth and he is still definetly healing from all this. The ENT agreed with RO and we also had followup with Chemo doc who also agreed. His case will be discussed at Tumor Board on Tusday and they are supposed to call Tuesday or WEdnesday. Probably won't change think they have all already decided. We will be patient and hope it is OK as opposed to surgery on the left as well as right.

Look for postings by davidcpa, who lives in Gulfport and also was treated at Moffitt. He has been very active in gathering information about HPV and even testified before the Florida legislature about it during the Gardasil debate.

He wrote once that, at his insistence, Moffitt sent his slides to Hopkins for HPV testing (and, I believe, said that Moffitt was now doing such testing in all suspected HPV+ cases), so he would be a good resource for you. You should be able to get his e-mail address from his profile or by clicking the e-mail icon on any of his posts.

All the best,
Leslie