For what its worth -- just to confirm that there is not always consistency in advice-- Barry and I were at Hopkins today meeting with dental oncologists and they use the trays and advise using the fluoride gel forever . They also advise using the trays during the radiation (without gel, I assume). This supposedly helps with scatter from fillings. Barry has a lot of crowns but they said his teeth were all sound and he didn't need any work. Thank goodness.

He will have a exam two weeks' after start of treatment to look at salivary function and any problems developing. They use a newish drug (Evoxac) to stimulate salivary function even during treatment if it appears it will help.

Tomorrow meeting with chemotherapy team and doctors again...

Gail

John had 1st 3 days of rad. and then 4 days off because of Memorial weekend. Go figure. Amy

Hi Michael,
I've been away for a few days. Glad your extraction went well and you have decided on a treatment center. I too was very glad to get treatment started. Wanted this thing killed as soon as possible.

I had XRT not IMRT and they pulled every tooth that had a filling in it, so I lost all my rear teeth, but that was back in the dark ages. My current dentist/prosthodontist, who specializes in cancer patients, uses no metal in my mouth. I'm not certain what the substance is that he uses to fill the teeth, but it is not metal.

Fluoride trays are not that expensive $400 or so. The fluoride is cheap. Is there some reason that they don't want you to use both the toothpaste and the fluoride trays. You don't sleep with the trays. You put them in your mouth for 15 minutes and then don't drink anything for 1 hour. I use them in the morning while I shower. I think the toothpaste has a higher level of fluoride that my Gelcam so that may be one reason they prefer the toothpaste. Also the Gelcam stains my teeth something awful. Much worst than when I was a 3 pack a day smoker.

Are they going to put you on anything to protect your saliva? If this hasn't been discussed ask them.

If you are meeting the VP from Imclone in NJ headquarters this week, I work about 20 minutes away. Send up a smoke signal or email.

I hope everything goes well for you. Eat up at all those good restaurants on the East side as long as you can. Hope you found a good place to stay.

Take care,
Eileen

Michael,

I had 9-hour surgery (tonsilectomy + RND), 33-radiations and 7 concurrent chemo (weekly cisplatin). 10 days before the radiation, I had 4 teeth pulled. During the radiation, I had a real bad infection, I was hospitalized to release the abesess (sp ?). The infection forced me to stop treatment for 9 days. My throat won't heal for three months, then Dr. ordered Hyperbaric Oxygen treatment.....

Many infections/inflammations I could not remember due to my allergic reaction to the plate in my jaw. After Dr. removed the plate 12 months later, everything took a good turn.....

I was 38 when diagonsed, now it has been three years.

You are in my preyers


WZ

Hi all,

Besides the "Gel-Kam", another good thing for the trays is "GC Tooth Mousse, a topical cream with bio-available calcium and phosphate", available through the dentist. Good for extra toughening. This is an Australian invention I believe, and made in Japan. Here it costs around AU$20 (with our dollar nick-named "the Pacific Peso", it should be cheaper up there!)

I also leave the trays when showering - saves time, whatwith all the other things you have to do

Cheers!

Tizz

My trays costs 200 dollars in California where everything is more expensive. The flouride I use is prescription and pH neutral. It is Bultler .9% Neutral Flouride Topical Foam - MUCH better than the OTC stuff. Oral B also makes one (both of these are a 5 minute treatment). Your dentist should be able to set you up with it. I also have 4 flouride treatments a year with more potent flouride 1.8%). I have lots of crowns and fillings and haven't had much in the way of problems. I had IMRT and only lost one parotid gland so most of my salivary function has returned, although it took about 18 months. I didn't take Amofostine and the RO said I probably would not need it anyway. Metal fillings shouldn't make much difference.

The stuff Tizz mentioned probably isn't available here because it would be prescriptive here and would have to be approved by the FDA. Check with your dentist.

Some people have talked about "side scatter" from the gold in crowns. I put cotton rolls between my teeth/cheeks and teeth/tongue and I think helped it a little. They have mouth guards also.

Some people react worse than others - what will be will be.

Are you getting chemo too? If so be sure to get the chemo after radiation - not before. If you are getting Cisplatin, your firat infusion should coincide with the first radiation treatment.

You need to ask what the total dose will be. 72 cGy is the minimum amount and 81 cGy is the maximum (AKA "Boost")

Hi Michael,

I use both the prescription fluoride toothpaste and fluoride gel in my trays. Although I have some fillings I didn't have to have any dental work done prior to treatments and didn't experience any problems with these fillings during radiation (XRT). My trays cost 250 dollars so, Gary, I guess California and New Jersey must be charging about the same!

Hugs, Nancy

Great information guys!

I KNEW this would be the place to get the best info :-)

We are returning home this morning via JFK.

Our visit was a short 3 nights, and I got to see my Medical Oncologist, the head of their ENT Dept, and my Radiation Oncologist.

We took MRI's and did my simulation.

I also saw their dental team, as mentioned above.

The MRI was a grueling 2.5 hours and I couldn't move my face a millimeter. My face is so big, the "cage" didn't go around it, so they had to remove the little pad that goes under your head. So there I was for over 2 hours the back of my already tender skull resting on a cold hard surface. By the time it was halfway through it felt like my head was onfire with pain. My hands fell asleep and my butt hurt

Hear's a quick piece of advice for anyone having H&N MRIs:

1) Don't drink coffee or other fluids prior, and empty your bladder just before!

They didn't tell me this, and about an hour into it, I had to pee like a race horse! They said, if they let me off the table, they'd have to start over from the beginning! and that would mean rescheduling for another day!!! (We fly out this morning)

So, I just held it, but it was the worst part, by far.

I hate to sound like such a big baby, I mean after all, it was only an MRI, but if someone else can avoid this discomfort by just following the above advice, it's worth mentioning.

I scolded the MRI team that they should have advised me of the length BEFORE I got on the table.

That's it for now.

I had my simulation yesterday, and it went ok too.

Same head/skull/fire thing, but it's over now.

My face looks like a belgian waffle...(MMMM, I gett'n hungry now!)

I'll post more when I get home tonight...Hope everyone is good out there!

Treatment will start August 10th, so we'll be back around the 8th or so.

Hi Michael --

You and Barry start treatment on the same day -- we will be thinking about you! Luckily he had a good MRI series done before his tonsillectomy and this was sufficient -- it was in a new high-field open MRI here in DC and though we were warned "they will want to re-do it as open MRI's aren't as good as closed systems" they found the quality to be excellent. (Good thing, too -- Barry is pretty claustrophobic and the only way he could do a closed MRI is to be sedated -- me too...)

Are you getting a gastric tube? He will, although not at all happy about it, but since he is getting neck radiation as well as base of tongue, the Hopkins crew feels he will need it. Although he has managed to pack on about 12 pounds since July 5 when we went up to Sloan, the nutritionist felt he would just lose too much weight without supplemental feeding when his mouth/throat start to get bad. Dehydration is also a big concern as he's getting amiphostine and has to drink 24 oz. water before getting the drug.

(I am proud to say I have resisted the cheescake, cashews, ice cream etc. and have NOT gained any weight in last two weeks -- but it has been tough! <gr>)

We are now through with all the consults and workups and plan to take off for some few days to get away!

Good luck,
Gail

(Barry Cooper's wife)

Barry: Dx 6/21/05| SCC| Right tonsil and 1.4 cm base of tongue| 2 nodes right side| Stage IV, T3N2bM0| tonsillectomy 6/21/05, negative margins except at b.o.t. area|chemo carboplatin 6x, 7 weeks tomo radiation commencing 8/10/05.

Michaelii, will you be taking Ethyol to help with the saliva? My dad is going through his IMRT and Cisplatin now-he's down to get the surgery you had in June in Sept. So, we'll give you hints on the chemo/rad and you can give us hints for the surgery-deal? My dad noticed that his mask is getting tighter? Does the radiation cause swelling or could it be the fluid shifts for that day? He has had NO adverse reactions to the Ethyol.