I am going for my second visit with my oncologist to plan the radiation schedule, mask and ct scan. It seems it has been forever getting to this stage. I have a couple of questions that I know to ask, but if anyone knows of any questions of importance that I should be asking, please let me know. Thank you, Angel

Hi,

I remember that like it was yesterday.I had the same diagnosis.

Treatment, not so good. Surviving 5 years, pretty good trade off.

It will go fast. You will get through it just fine.

God Bless

Robr, Thanks for the reply. Our symptoms are very similar, but our treatments differ greatly. Me, no neck dissection or chemo.

I wanted my radiation first thing in the morning so I would get it over with when I knew I would probably feel my best during that part of the day as compared to later in the day. It worked for me. Other than trying to get it scheduled to best suit you, it's just show up, get nuked and go home. If you're like most of us you will have the first 2 weeks without effects; then increasing bad side effects for about 6 weeks and then you will feel like you just walked out of a nasty dark tunnel. I am a little surprised that you are not getting any chemo especially with no neck dissection and positive nodes. Were you tested for HPV?

Hi David, No they never tested for HPV. Nice to talk to you again. It's been awhile. Thank you, Angel

Hi,

I'm currently going through radiation txs...week one down. I'm taking my txs in the morning to get them over with immediately. It's nice, the waiting area is not crowded...once I was there in the afternoon and it was a full house! I'm in the center and back in my car within 30 minutes. I see the RO once a week. I have Pilocarpine to help with dry mouth but I'm still producing my normal amount of saliva. I was told I should get a 2 week free pass...after that it might be downhill.

I'm drinking about 64oz of fluid sometimes more a day. Mostly water. I still drink my morning coffee...And I'm taking in a lot of calories.....a lot. I'm not drinking soda...at least through txs. I also rinse with a mixture of salt/baking soda/water solution every couple of hours and especially after eating. I've had some reactions but all would disappear. I stocked up on ensure and carnation. It's like I'm ready for a hurricane or a bad snow storm!

Make sure you are using fluoride trays!

Best Wishes,

Raymond

Like David, I'm curious why no chemo with positive nodes? From my signature you can see that my nodes were clean. If they were positive my RO and ENT said chemo would have been done on top of the rad txs. And that was only after the Docs (my tumor panel) got together to discuss if I would benefit with chemo. So with my diagnosis chemo was a possibility even with clean nodes. Just curious. You may want to ask the Docs why? I would.

Best wishes

Ray1971, Thanks for all the information. When you used your fluoride trays, how long did you leave the trays in before you took them out? I usually use mine before bedtime. I saw my oncologist today. He said I would have 35 treatments, and I did ask him about the chemo and he said he was not sure yet as he wanted to see the current ct scans and talk with another Dr. before making the final decision. I had to have some dental work done and due to that and one of my Dr's. holding things up for me until I kept calling them back to get things done quicker. I had my tonsil removed the first week in June, 2008, and am just getting to this point for radiation so I have been very worried about the length of time this has taken. I have some very kind Dr's. however and they are very nice to me. Thanks, Angel

I started my trays 1 month pre Tx and have used them every nite since except for a few nites during Tx. I keep mine in for 30 minutes each nite. Once or twice I fell asleep with them in. I have never experienced any adverse side effects from using them and I have now switched to the generic fluoride which is much much cheaper.

Regarding use of the Fluoride Trays, I have noticed there seems to be differing instructions.
I am not sure, but perhaps this is due to the fluoride being prescribed.
Below is copy of the instructions I was given (OCR scanned).
_________________________________________________________

Sharp Grossmont Hospital: David and Donna Long Cancer Center
Harold J. Gulansen D.D.S. / Peter F. Johnson, D.MD.
Diplomate American Board of Prosthodontics
Prosthodontics, Maxillofacial Prosthetics, Implant Reconstructions

INSTRUCTIONS FOR THE USE OF FLUORIDE TRAYS
1. Brush and floss your teeth
2. Place enough fluoride gel to just cover the bottom of the trays
3. Place the fluoride trays over your teeth as directed
4. LEAVE THE TRAYS ON YOUR TEETH FOR 5 MINUTES
5. Remove the trays and spit out excess fluoride gel
6. DO NOT RINSE YOUR MOUTH, EAT OR DRINK ANYTHING FOR 30 MINUTES
7. Clean the trays with a toothbrush or cotton swab
8. Place the trays in water for storage

USE THE FLUORIDE ONCE EACH DAY, EVERY DAY, EVEN AFTER YOUR RADIATION IS COMPLETED.
As a result of radiation, most patients experience dryness in the mouth. A certain amount of dryness will probably persist forever after radiation therapy to the head and neck. The most common problem associated with a dry mouth is rampant dental decay and periodontal (gum) disease. DAILY application of fluoride has been shown to be effective in preventing these problems. If a patient. is not compliant, dental disease, oral infections and infections of the jaw bone are common problems.

If you have any questions, please call our office for assistance.

______________________________________________________________

FYI:
The fluoride I am using is OMNI GEL 0.4% Stannous Fluoride / Made by: 3M ESPE
I have been using Grape flavor, one of several flavors available and I pick it up at the CC Prosthodontics office for $12 per 4.3oz bottle. A bottle lasts about 3 months.
I was told any Fluoride Gel of about 0.4% to 0.6% is fine to use and generally available without a prescription from most pharmacies.