When we were up at Sloan, we were told they don't use ethyol routinely. They do at Hopkins, and it is sub-cu so injected at one or two sites about 1/2 hour before the radiation. You have to take pre-meds (anti-nausea and a mild sedative) about 90 minutes beforehand, and also, drink at least 24 and better yet, 32 oz. of liquid starting 1 1/2 to 2 hours before receiving the amiphostine. This is be sure you are well-hydrated, to avoid any blood pressure drop. The rad onc nurses both said they have seen relatively few problems doing this way but are perpared for the occasional more serious reaction. I did hear of one person almost having anaphylactic shock with the I.V. delivery, the sub-cu is not so radical. I understand from Barry's daughter, who used to work at Medimmune, that they are still working to find a better way to administer the drug to avoid these side-effects.

The OCF web site cites a paper that indicates that jaw exercises using the fingers are not very effective, compared to the Thera-bite system, in moderating trismus. One thing you should do is measure your jaw opening before start of treatment and keep doing it as everyone says this can "sneak up on you" -- which was confirmed by our dental onc as well.

Gail

Hey guys...

No PT was rx'd by anyone for the Jaw/Mouth...Although, I've been doing that since reading about it in this forum on a post.

Nor, did anyone at Stanford suggest PT for the neck surgery, however, Drs at MDAnderson wrote me an order for it after seeing how tight it was.

There are so many little nuances to treatment...Just like the Amifostene...Some use it, some don't.

Just goes to show you again, how different treatments can be from one institution to another.

From what I was told, Sloan has virtually "banned" Amifostene, but don't quote me on that exactly.

Where do I get this Thera-bite system?

So are they planning on giving you anything to help preserve your saliva or are those glands not going to be in the field of radiation? How about the pill Salagen?

I'm off to the horse races at Saratoga till the 10th. By then you should have started treatment. Best of luck.

Eileen

Micahel --

Go on the OCF web site under Dental Issues and follow links to Trismus -- there is a link to the Thera-bite company. Some insurances pay for it if it is deemed medically necessary. Barry ordered one, his ENT (who herself had HNC and knows what it's about) filled in the form for medical necessity, he faxed to the company and it's being shipped tomorrow. The woman he spoke to there said they get a lot of head and neck radiation patients referred to them.

Btw, Barry's ENT had a similar device to use when she had radiation, this was 15 years ago -- she said you have to use it regularly or things can stiffen up quickly. (She didn't and had some problems, now resolved). She also said when you get the PEG you have to try as best you can to continue to swallow, even if it means swigging 2% lidocaine beforehand as she has several patients who are several months out of chemoradiation and who relied 100% on their feeding tube and who now cannot swallow at all. She herself used lidocaine and managed to make it through the radiation swallowing although she says it was very hard.

Gail

Michael,
My Therabite just came in the mail today. My oncologist at MDACC gave me a prescription and I got the insurance company to pay for most of it. Now that I have received it, however, it says to have your "clinician" show you how to use it properly. My dentist has never heard of it and I am certain that the oncologist does not know much about the device either.
Who would be familiar with this...the speech pathologists at MD Anderson, or the dentists there? Or is it simple enough to watch the included video and do it yourself?
If any of you know ( like you Brian ) please help. By the way, I wish that someone had told me to get it 3 years ago when I was first diagnosed rather than now, when the jaw has probably gotten pretty stiff.

Thanks,
Danny G.

Gail, can you get Barry's Ent to visit this forum? A 15 yr HNC survivor is another inspiring statistic Amy

Wow...Lot's of GREAT new info! Thanks all!

I'll work on getting one right away.

I've heard about the swallowing thing, in fact I've read that one can spontaneously develop a hole in your throat from lack of swalloing...has anyone heard of this??

I guess it's the old law of nature..."Use it or loose it."

Eileen, the RO said she doesn't want to use anything to try to preserve the salivary glands...She promisses since she's the "best" and using IMRT that it won't be too bad...(I hope she's being truthful)


I have some 2% Lidocaine solution I got on the internet following the tonsil surgery.

I asked the ENT's at Stanford for some when the pain was at it's 9.5 peak, but they refused saying that it makes it too dangerous to swallow down the wrong tube, but I used it after carefully and never had a problem.

I've been swishing with Aloe Vera 3x daily preradiation and drinking it too. May be a total waste of time (& money), but I'm hoping it will help...(we'll see

Hi Danny,
Haven't written in a while-my husband has just finished chemo and rad and was really rough. Anyway, he has the Therabite as well. We had our lymphedema physical therapist show us, but certainly the oral maxillofacial surgeons are familiar as well as physical medicine md's. Our PT was well versed-better to have someone show you and discuss settings and progression. You could always ask the prescribing doc.
Good Luck

Glad to hear Lee made it through...

Sorry, I can only well imagine how rough it was (is), and am following right behind him.

Where did you go for his tx?

I guess I'll ask for instruction on the Therabite, even though I'm the kind'a guy that never reads the instruction manual...(Wait, aren't all guys like that?

Anyway, thanks for taking time out to update us all...Here's to happy healing for Lee...He'll be in our hearts and prayers...

- Michael

I've seen the TheraBite video and it is pretty self-explanatory. While I did not use the device, I have heard from many that have and found it effective. I used the old idea...stacking wooden tongue blades between my anterior teeth, each day pushing myself to get one more on the stack during treatment. Before radiation I could put about 16 of them between my teeth, my goal was to see that number stay the same all the way through treatment. As trismus takes effect, the muscles are less elastic and this becomes progressively harder. Scar tissue builds up in them and this does not reverse itself. So the idea is that each day you try to keep stretching the muscles to keep the scar tissue issue (say that 10 times fast) at bay. It will not prevent the formation of the scar tissue, but it will increase the elasticity of the muscle overall and keep the ability to open your mouth fully at an expectable level. By the end of treatment I no longer could do the same number of blades, but I was close to it. If you do not pay attention to this, you could be in a situation where eating is a serious problem let alone the issues of speaking and diction.