Hello folks,

So I got a call yesterday from the RO that they are re-staging from 3 to 4 due to the pathology coming back positive on BOT in addition to the tonsil. The positive note of the pathology report is that the stain came back 16+

So the RO said that she has been in contact with my MO (whom I haven't met yet. but will meet this upcoming thursday) They were originally hoping to not have to radiate both sides of my neck and were going to use Erbitux if I had neg margins.

With the report results, they feel since the cancer has spread that it is now necessary to hit both sides, more on the right than the left though. They also believe it warrants the Cisplatin rather than Erbitux. Also they are recommending a PEG.

I was pretty prepared for this. I really like the RO and have a good gut feeling about her. Family and Friends are urging me to get a 2nd opinion so I am going to do that part as due diligence.

I guess my real questions that would probably get answered by a professional at some point is to do with the PEG. RO is recommending a diet of 2500 calories a day. Is there special formula or do you all just use ensure?

With Biotene being hijacked by corporatist thugs, is there a replacement mouth care system that anyone can recommend to keep the mouth area healthy?

So far there hasnt been any commercial products made to replace the former effective Biotene products. Brian is working on this with some of his contacts. It could be a long road to get anything on the market.

The 2500 calories daily are a MINIMUM! Do not skimp thinking you can make it up the next day as tomorrow it never happens. If you shoot for 3000 a day and only get 2500 then you are still ok. Water intake daily is a minimum of 48 oz some will say it needs to be more so push yourself to take more in. Water is especially important when having chemo as chemo can cause kidney problems so you need to drink water to make sure you flush that poison out of your kidneys. If you can stick to these guidelines and do this daily you will get thru your treatments much easier.

Have you had a hearing test or been to your dentist yet? You will need flouride trays made to help protect your teeth.

Im surprised you were restaged and the tumors were given their own stages. My first round I had 2 seperate tumors. This is pretty rare but sounds like you are like me with 2 OC sites at once. Each of my tumors was staged and classified, one moderately differentiated and the other well differentiated but both were Stage I. I guess different facilities will do things differently. Just so they will eliminate the cancer thats whats most important.

At this point, eat everything you can and then have seconds. Pack on a few extra pounds as most will lose considerable amounts of weight during treatments. If you want to drink your calories you can try Carnation Very High Calorie formula. I couldnt stand the taste of any of those drinks but some seem to do ok with them. Each container has 560 calories per day so if you drink 5 or 6 daily then you are ok.

Good luck with everything!

Trust in your doctors is probably just an important thing as anything else. 2500 calories is just an average for everyone. It really goes by your weight, height, BMI, activity level, special requirements like fighting disease, after surgery, etc. With cancer treatment It could be as high or higher than 3500. Most CCC have a nutrionist on board that can help you or go to one of those calorie calculator sites, and there are formulas used by the professionals, which is not difficult, but don't recall it off hand, and use one from their nutritional society. Some go by a half a gram of protein for every pound, some say a gram of protein for every pound you weigh, then for carbs, fats too is writhed. The same goes with water. It's usually half your body weight, more with added elevation, activity, etc, in liquid ounces, and with certain chemo's you want to flush the toxins out of your kidneys. The other think is cancer feeds on nutrients, so it's not all you can eat Buffett, but I don't know anyone who does during treatments.

Good luck.

Hi Brian,

Welcome. I would not fret about getting radiated on both sides. Since my cancers did not cross the midline, I was under the same impression as you - rads could be given to just the cancerous side. Wrong. The RO explained they paint all around your neck but adjust dosage depending on the scans.

His explanation was pretty simple which I bought into - better safe than sorry. This aligned with my own philosophy on the battle strategy which was to hit it as hard as possible leaving no chance of second guessing later if more could have been done.

Shrinking the chance of recurrence to the most infinitesimal odds was my primary goal of the entire experience. I sleep very well these days.