I have recently been diagnosed with a T1N1M0 (HPV+) on my right tonsil tissue (I had my tonsils taken out as a kid). I had a MND on the right side of my neck in which they took out 18 lymph nodes, with one being positive. I just started today my first of 33 sessions of IGRT at the University of Miami (Sylvester). Due to the size of the source and only one positive lymph noce, the team (who have been excellent to date) are not recommending chemo. The radiation dosages that they are scheduling me for are the following:

right tonsil area - 70 Gray
Left lymph nodes - 54 Gray
Right Lymph nodes - 60 Gray

A couple of questions:

1) I just starting taking Cephasol today corresponding with my first IGRT session. They recommend taking it every six hours (4X per day), the maximum dosage is 10x per day). Is there any downside (except costs) in rinsing more frequently even though I am at the beginning of my treatment? Also is it OK to gargle with it or just swish it around my mouth per the instructions?

2) My dentist gave me a prescription for Carafate solution. Has anyone had any experiences with using Carafate? Also when should I start using Carafate (I am assuming that I should not use it until I start having issues)

3) My dentist gave me a prescription for diphenhydramine based solution . Similar to the question above, Has anyone had any experiences with using diphenhydramine? Also when should I start using diphenhydramine (I am assuming that I should not use it until I start having issues)?

Any other tips/tricks/traps would be appreciated.

Thanks for all you help

Sadly none of those drugs are familiar to me. My dentist gave me flouride trays an flouride that's it! I used the baking soda/ salt mixes to cleanse and heal my mouth during radiation and I used it frequently, I used a waterpik on low to Clem out any guck in my mouth as well. For me the manuka honey staved off mucositis until the last 3 days of radiation! It's worked for others too... But it' doesnt work for everyone. Make sure you clear any meds your dentist has given you - with your RO - its best to make sure they all know hats going on. good Luck and take care.

Cheryl - Did you use your fluoride trays throughout your radiation? I was concerned as I heard that fluoride can be hard on the gums.

Thanks - Steve

No - I used them for the first few weeks, I told my dentist the flouride irritated me greatly he said keep your mouth clean brush if you can with a soft tooth brush, try using the trays on weekends only. I still use the trays - they are for life and they still hither my tongue and mouth... Flouride can irritate your mouth - they do have ph balanced ones but apparently they are expensive. I've tried two so far the second was less irritating but still not great - I have an appointment with my dentist next month, and will change to the most expensive but ph balanced then - right now because of the irritation it don't use them right before bed (which is ideal)- but I do use them daily . I have breakfast, brush and water pik, then flouride... After 2 hours I rinse With the baking soda solution... I also use a very expensive toothpaste that's ph balanced but high in flouride and an alcohol free and gentle mouthwash in my waterpik! Makes me feel fresh. Hoping to be able to do the before bed thng again with the trays once I get the new flouride. I should have told him to give me e most expensive one from the outset - bottom line dental care can cost a lot more! Take care and good luck... You'll do fine!

Cheryl - Thanks for the advice, I have been brushing with my perscription fluoride toothpaste and will use the trays on the weekend. I used the trays every night for 10 minutes the two weeks prior to beginning radiation. I will use the trays on the weekend (I was a bit concerned of the irritation of the gums especially as during the later weeks of treatment. My Radiologist told me not to worry about the fluoride during treatment.

I bought a waterpick and am using it instead of flossing as I hear it is easier on the gums.

What mouthwash have you been using with your waterpick?

One of my homeopathic doctors that I have been seeing is recommending sea buckthorn oil to coat the mouth during for the next couple of weeks. I am using that with Caphosal with I am using 3-4 times a day even though I have not had any symptoms yet.

Have you or anyone that you know had any experience with Sea Buckthorn Oil?

No no experience with that but try manuka honey... It got me to 3 days before the end of treatment. Before I had any real pain. I use tom's of Maine natural mouthwash (alcohol free) just use a but to give some freshness, I also use a Swiss one... It is gentle and alcohol free. I have an appointment at the hospital tomorrow. Ill drop by the dental oncologists then and grab the ph balanced flouride. Hopefully that will make things easier. You can ask your dentist he may have one available. Good luck. Let me know if the buckhorn works... But ask your rads guy before you use it. Weird things can cause problems with radiation. Take care.

Please advise on how to use the manuka honey.....

Here is a link to a thread which discusses manuka honey. If you want to find info quickly, its easy to do a search. Type 'manuka honey' in the search box up towards the top right.

manuka honey info