How soon before/after ACTUAL rad treatments should one do this?

Do I still have time to order the device, learn how to use it, etc?

Or should I just do the tongue depressor trick? (That's what I did following surgery in the hospital to re-learn how to get my mouth open big enough to eat)..Of course, my sister bringing me a pizza didn't hurt either :-)

Actually, the first couple of days, it was torture since I was starving and 'wanted' to eat solid foods so badly, but couldn't...UUgh! I just remember how miserable it was and don't want to repeat this during radiation.

I already am bracing for the mouth and throat sores/pains from the chemo/radiation combo...In fact, I still have some slight discomfort when swallowing since the surgery, like the muscles aren't the same, or something...It hurts a little under my chin when I swallow, almost like how a pulled muscle, or 'charlie horse' feels, but in my neck/chin area.

Guess it's always something

Hi Michael-my dad has been doing the tongue depressor thing 7 times a day for 5 minutes since BEFORE all of treatments. I say-start now to form the habit. They recommend he do this for one year-he does it religously but now it is difficult because his poor mouth is a mess-he started his 3rd week of rad on Monday-he is down to a liquid diet only- I am in the medical profession and based on recommendations from MD's to PT's-the act of religous stretching of the jaw does the trick. Hey-maybe we can start JAW YOGA!

Lee treated at Univ of Pennsylvania. We also got 2nd opinion at Sloan who concurred with surgery(Lee had Non-Hodgkin's lymphoma in 1996) so couldn't have enough rad alone without surgery. He will start swallowing Tx in a few weeks so we're hopeful...docs said if he can learn to swallow liquids(solids never possible) trach can come out! He hates that thing so much! Good luck to you I will be thinking of you.
Doreen

Does this mean we all have to become ordained?

Since Mark has survived for 4 years and 5 months I feel he should be given the honor of being ordained first. Now how are we going to ordain him and who is going to start first?

Doreen, thanks for the warm thoughts and update on Lee. I will be hoping for a quick response for him.

Barb, I nominate Gary for the honors of ordaining Mark first :-)

Hi -- Back from Maine -- we received our Therabite set while we were away, only 3 days' after ordering; reading instructions, it seems straight-foward enough. Didn't get a video, is this supposed to come with it or was it a separate order? The dental folks at Hopkins just recommend the fingers method, but after reading the paper on OCF web site decided that was not good enough -- will start right away, especially after heeding Barry's ENT's warning re swallowing issues and trismus.

The Hopkins rehab people told Bary to start using aloe vera gel (the 100% type, that you can swallow) both of neck area externally and in mouth; they also sent a sample of some cream (not Biafine) that is specially for radiation burns (Burn-block) -- the name sounds like you use it before getting rads but the instructions are clear that you only use it afterwards.

However, as a biologist I have been a little skeptical from beginning about the admonition not to put anything on the skin before radiation -- the photon beams are passing through various (and varying thicknesses over time) layers of skin, muscle, fat, etc. -- all of which have different densities -- and yet can be more-or-less precisely targeted -- how can 1 mm of say aloe gel cause any deflection of such energetic radiation? Not that we are going to go against what the radiation people say, but it doesn't seem to make much sense.

Same as with admonition not to take certain antioxidants, but if you look at what's in Boost, someone taking 6-7 bottles a day, is getting lots of C, E, and other proscribed vitamins in the food -- just as if they were popping the pills...

Oh well, on with the show...

Gail

FYI - The TheraBite company was recently bought from it's inventor / founder and all around great guy Bob Horst, so it is now part of a bigger medical firm, which is located outside the US. This may have caused some changes in packaging, what comes with it, etc. However, the product itself has not changed. Bob was always an oral cancer cause supporter, and now that he has retired (likely with some financial security from this deal) I wish him well, and thank him for the manner in which he cooperated with OCF in the early days. He has written the new corporate owner and suggested that OCF would be an organization worth supporting... but it appears that being on the other side of the pond, they do not see the value in that. Anyway, that doesn't make the product any less useful, and we will continue to tell people about it.

While I haven't asked the question of an authority, I was told that oils, lotions, etc. shouldn't be used because they might contribute to the burning of the tissues, and not because they might block something.

On the question of pre-rad ointments, etc.; for what it's worth, I've too have heard it's more a question of the synergy of the radiation and the cream, ointment etc, causing wierd combinations, burns, and reactions, more than the thickness/ray distortion. Maybe like how fluids, water, etc change the effect of sun rays (sometimes unpredictably) on the skin...but I could totally wrong on that one...(and everything else for that matter:)

What's it called, Refraction?

We just landed this morning (5:30 AM!!) in NY...

Hot & humid here, but not as bad as 11 days ago.

Glad to be here and starting the ball rolling...

There's an interesting new release today about Hemoglobin levels, in esophogeal cancers, which may or may not relate at all to ours, but it's mildly interesting...

http://patient.cancerconsultants.com/news.aspx?id=34722

My blood labs from 48 hours ago had HGB at 14.8 g/dl :-)

The thing that's bugging me the most the last 2 days is a "feeling" in my throat/mouth

I "feel" like the cancer's returned to the right tonsil tumor bed !!

I can FEEL something in there, especially when swalling, like something's stuck in my throat (how post-nasal-drip feels a bit), but it never goes comnpletely away...sometimes it's more noticable than others...

I can kinda feel like it would cause me to gag sometimes if I let it, and maybe make's my voice sound a little "gargle-ie", like I need to blow my nose sounding...

Of course, I had the 2 wisdom teeth removed on the other side about 13 days ago, had 4 fillings last week, a deep cleaning, etc, so there's been a lot of hands in my mouth!!

Then, I got sick with a 4 day cold the end of July too...

Anyway, I have my GTube surgery tomorrow, so we'll see if I can talk to an ENT while there.

They did an MRI last vist on the the 27th, just before my simulation, and I never heard anything about the results...I wonder if someone would have told me if there was something alarming??? Problably not, they'd just wait until my next appt... :-(

I should have had the radiologist's reading sent to me via fax, but forgot, and at the time, felt like it was more of a formality, to establish baselines, etc.

Maybe I'll feel better after some rest and jet lag catch up.

Things are worse on a weekend, or at night, since easily accessable health professional are slim..I think this adds (like I've said about nighttime before) to the anxiety.

Eating seems to temper the "sensation" a bit, so we're off the 3rd Ave to find a great street side bistro table..

I do notice that I have no "pain" in the site (like I started to get 24 hours just before the surgery), and no ear aches, fevers, or anything like that.

Gail, I think the aloe is a good idea too, I've been "taking" it for a couple of weeks now...100% pure, oraganic, and I've read that "Cold Pressed" is important too, but who knows!?

As far as vitamins as pills, versus in "foods" we consume, my surgeon answered this paradox by saying, "...no one really knows!"

(at least he wsa honest:)

Anyway, he say's that science doesn't understand why completely, but nutrients from foods are different to our systems than pill form suppliments so maybe that's a distinction to help exlain why vitamins added to 'foods' don't affect tx, but suppliments do..?

Or, maybe it's a way for the health care professionals to monitor (read: control) what we take into our bodies in the way of pills, suppliments, herbs, and medicines..?

Hope everyone is well!!!!!