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#17980 07-27-2005 06:15 AM
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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~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
#17981 07-28-2005 06:10 AM
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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" eek

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?) wink ...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? mad

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


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17982 07-28-2005 06:58 AM
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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#17983 07-28-2005 10:05 AM
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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-


Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
#17984 07-28-2005 11:59 AM
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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 :-)

#17985 07-28-2005 12:16 PM
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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. laugh
Blessings,
Barb~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
#17986 07-28-2005 01:09 PM
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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 ;-)


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17987 07-28-2005 01:10 PM
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PS: Barb, what are you down to ..?

Just 7 or 8 ?

YEAH!!!!


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#17988 07-28-2005 01:51 PM
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THe port is a surgical implant. They'll find 'em -the folks in infusion are usually pretty highly skilled. I responded so well to treatment they shortened my infusions to 2.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#17989 07-28-2005 04:20 PM
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Yeah, the "surgical" part of 'surgical implant' is the reason I've been reluctant.

I'll avoid one if possible...We'll just have to see.

Sometimes I can still "feel" one of the drainage tubes as if it weren't ever removed, so I am not looking forward to how weird the G-tube is gonna be.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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