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.

Ugh! I know how you feel. I never got a pad for my head when they made my mask either. They are much improved over the old ones I think. Did they nuke yours first? Is it tight? How did they do your nose?
I am almost done. 8 more. whooohooooo Its good since the skin is breaking down on my neck and I am now wearing the jelly pads. TG for jelly.

Blessings,
Barb~

Barb, is that Strawberry or Blueberry Jelly?

(what is with me and food lately?) :-)

They didn't nuke the mask, they soaked it in what I presume was a solution of warm water and who knows what else.

It seemed to get tighter and tighter and tighter as I lied there, but not horrible. It was a yellow, plastic like net mesh material, so they only cut a hole for the bite block I had in my mouth, which they made moments before hand.

Incidentally, the whole time I was simulated I had this feeling that the new bite block; (like an oversized plastic tongue depressor that's hollow in the middle for breathing), was not lining up with my teeth impressions properly. But, I couldn't move or talk so I couldn't tell them.

Turns out, afterwards I put it back in, and sure enough, it had been upside down the whole time!

Oh, and the hollow part, I didn't figure that out until over half way through. Prior I was nearly gagging trying to breath around it and through my nose, and by accident I noticed I could breath "through" it.

Anyway, Shawna, I've never heard of Ethyol, what is that? I'll ask about it too. I have read that radiation does indeed cause some swelling, and I imagine it has something to do with the fluids and possible tissue damage, but ask the Dr. My mask kept getting tighter just in the hour or so I was in simulation, in fact, towards the end I could feel my pulse in the mask, and it seemed to get tighter and tighter in synch with my pulse...wierd huh..? :-) But, it's MUCH better than what I've read the horrible plaster masks were like.

Gail, YES, I am getting a "G-Tube" also. I resisted it, but as the Dr put it, better to go through a little discomfort now, even though possibly unncessarily; than to go through a lot of discomfort in 5 weeks, necessarily. So, I'll be getting my Borg implant too.

Now, all I need is the Port-a-cath and I'll be wired for sound!

[quote] (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>) [/quote]---What is this? We should relabel this the "Food Channel"

Anyway, it's good to be back home, albeit for only a few days.

I can't imagine how good it will feel to return home after two months of sweltering New York stinch, burning and poisoning. Guess I'll use this memory as inspiration to get it done and back home.

Tizz: I'll look into the "Gel-Kam"and "GC Tooth Mousse" (Does that come in chocolate?) ...thanks.

Yes, Gary, I am going to be getting the chemo too...Cisplatinum...I'll try the cotton ball idea also.

I don't know what "level" I'll be getting, I suspect that will be determined during the workup following Tuesday's simulation..?

I'll like Nancy's idea of using both, at least for a while...Do you guys think I can use the trays even on the days I get radiation (not during of course), or will the pain be too intense?

I'm going to the local dentist tomorrow for a cleaning and at least two fillings...Still don't know what kind to get??? Metal I guess.

I'll discuss this with the local dentist (although he's problably only seen a handful of cancer patients).

As always, THANK YOU ALL for everything!!!

- Michael :p

What IS your protocol? - Cisplatin would "only" be 3 +/- 1 infusions - I don't think they would put in a port for that.

If you have a bite block you may not be able to use the cotten rolls.

Be sure to bring some good tunes with you - All of the treatment rooms I was in had stereos. Music was an important part of my treatment routine (I played mainly thumpin' Gospel & Christian). Never had an issue while on the table. I had them give me a blanket and they should automatically give you a pillow or bolster for your knees.

I didn't have any swelling, very little skin damage although they warned me of some "texturing" in the muscles afterwards. Thyroid is normal. My overall issues now are very minimal (thank you IMRT). It took a good part of 2 years for things to settle in.

Hello Michaelii-Ethyol/Amifostene is used to :"reduce incidence of moderate-severe radiation-induced xerostomia in patients undergoing postoperative radiation for head/neck cancer where the radiation portal includes a substantial part of the parotid glands" (Micromedex)
My dad gets a subcutaneous injection daily before radiation. They have to monitor Blood Pressure-he is young-does great with it. Ask them-

I feel ripped off, my mask was only a dull grey color and my mouth piece had no hole in it so i had to breath through my nose. But i did get a head pad :-P
They heated my mask in hot water then stretched it over my face, the first few seconds were kinda freaky then when i realized that i could breath through it i calmed down.
Michaelii, good luck in your rad tx and we are all here pulling for you and to help with any advice you need :-)

Ugh. They nuked my mask, laid it on my face, pulled up the nose and it was dry in 3 minutes tops. Of course when treatments started I had the head pad and the bolster under my knees.
As for my "jelly" I don't think it has a flavor. hahahahaha As for my music in treatment its Janis Joplin and Stevie Ray.
Blessings,
Barb~

Gary, my cispl. is only 3, maybe 4 infusions, so no port is planned but my veins are not real easy to hit, so maybe..?

BobGrey, thanks for the encouragement...Grey would have been a better color, it would have matched the color of my hat better ;-)