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Author Topic: New CK patient  (Read 14164 times)

ppearl214

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Re: New CK patient
« Reply #15 on: March 27, 2006, 06:41:40 am »
Ok, dr prescribed me Decadron to start 2 days before treatment, to use during whole time and 1 month to wean off... spoke to the oncology nurse the other day and questioned this based on everyone else. Shared with her that I found that to be unusual and understand his protocol he wants, but have posed to him that I'm a little uncomfortable with the protocol. Waiting to hear back from him so I can get to the bottom of this... seems a bit much to me.. will keep you all posted.

Phyl
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Kilroy1976

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Re: New CK patient
« Reply #16 on: March 27, 2006, 07:29:27 am »
Um... the protocol seems a little extreme to me. Did they say what kind of dose you'll be on? I'm pretty sure you're not supposed to take large doses for more than two weeks.
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teasely

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Re: New CK patient
« Reply #17 on: March 27, 2006, 11:30:42 am »
So, I'll be going in tomorrow through Thursday for CK.  I'll be sure to report on the experience.  The mask fitting procedure and CT scan took only a few minutes.  Most of the time was waiting for the docs to look at the images.  I hope the CK is as dull as that!  They tell me the whole thing should only take 1 hour per day. 
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shoegirl

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Re: New CK patient
« Reply #18 on: March 27, 2006, 02:37:16 pm »
Teasely,

Good Luck this week!  I am sure you will do just fine.  Pick out some relaxing music - listen & relax - it will be over before you know it. Where are you having your CK?

Please do keep us posted!

Best Wishes, Suzanne
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shoegirl

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Re: New CK patient
« Reply #19 on: March 27, 2006, 02:38:33 pm »
Sorry - forgot you were going to Stanford!
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left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

ppearl214

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Re: New CK patient
« Reply #20 on: March 27, 2006, 03:10:50 pm »
teasley,

we are cheering you on big time and I will be VERY curious what your thoughts are on your treatments. I go in Monday for 5-day dose (next week), I'm on your heels! and don't forget the Atavan!!!!!!! :) And the good music!  I'm bringing Yanni and U2! :)

Best wishes this week!
Phyl
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jamie

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Re: New CK patient
« Reply #21 on: March 27, 2006, 04:30:13 pm »
Quote from: ppearl214 on March 27, 2006, 03:10:50 pm
I'm bringing Yanni and U2! :)

I thought you said "good" music, lol.  ;)

They didn't really give me a choice, they played some terrible easy listening music, guess they didn't want me to bring in any Korn or Slipknot....
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shoegirl

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Re: New CK patient
« Reply #22 on: March 27, 2006, 05:48:51 pm »
Hmmm,

They didn't seem to mind Lenny Kravitz and The The.  Well, they didn't tell me if they did.lol  :D
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ppearl214

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Re: New CK patient
« Reply #23 on: March 28, 2006, 10:24:27 am »
Letting me bring any form of music my little ole' zapped brain wants... so, figured I'd mix up the selection to accommodate the young and old in the treatment area.   A little yANni, U2, Elton, some country, some soul, blah blah blah.

Teasely, hoping this week is going ok... looking forward to the updates!

BTW, spoke to my primary care physician last night about the Decadron protocol BI gave me... she also felt it's a bit much but further explained about keeping me on it (and weaning it down to my first post-treatment MRI at one month) would give BI a better indication of lack of swelling post-treatment, especially since the dosage is low (4mg/2x day). Still waiting for a call back from BI about it as well... saga continues.
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jamie

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Re: New CK patient
« Reply #24 on: March 28, 2006, 11:24:12 am »
Quote from: ppearl214 on March 28, 2006, 10:24:27 am
Letting me bring any form of music my little ole' zapped brain wants... so, figured I'd mix up the selection to accommodate the young and old in the treatment area.   A little yANni, U2, Elton, some country, some soul, blah blah blah.

Don't forget to bring some Skynard, oh yeah and Slayer too!  ;D
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ppearl214

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Re: New CK patient
« Reply #25 on: March 28, 2006, 12:54:28 pm »
Heck ya!!!!!!!!!!!!!  If it's going to help me get through this, yep, bringing it with me... after 5 days of treatment, I think I'll be ready for a live concert! :)

Quote from: jamie on March 28, 2006, 11:24:12 am
Quote from: ppearl214 on March 28, 2006, 10:24:27 am
Letting me bring any form of music my little ole' zapped brain wants... so, figured I'd mix up the selection to accommodate the young and old in the treatment area.   A little yANni, U2, Elton, some country, some soul, blah blah blah.

Don't forget to bring some Skynard, oh yeah and Slayer too!  ;D
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teasely

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Re: New CK patient
« Reply #26 on: March 28, 2006, 04:15:58 pm »
Well, it was all pretty much a non-event.  Started at 9:00 and was out before 10:00.  Music was a bit lame, sort of Spa/New Age, but I guess they want to relax you.  Really, I've had dentist appointments that were far less pleasant.  Got an Atavan because I asked for it, and they gave me a Decadron pill at the end.  Went shopping for some baby gifts at the Stanford Mall after, and have roast duck wanton soup back home in SF.  I feel a bit tired, but it's probably mostly from the Atavan (or "Ata-girl") as my friend calls them. 

For anyone out there doing this or considering it, it's a cake walk, really.  All the decision making was far more stressful.  Now you just have to let yourselves be in the hands of the docs and their wacky machine! 

Does anyone know anything about vitamins, supplements, etc. that might help with the tumor killing process?  I'd be curious to know if I should be doing anything else.
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Larry

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Re: New CK patient
« Reply #27 on: March 28, 2006, 08:07:02 pm »
On ya teasely,

They are the good stories to tell especially for Phyl who is about to go through it.

See Phyl, nothin to worry about. The only concern you have is how much flak you are goin to cop on the Good morning thread!

Maybe take some good old led Zep and Cream to listen to, might be a concern if you start your head banging dancing with the machine on you - maybe not advisable.

Laz
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ppearl214

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Re: New CK patient
« Reply #28 on: March 28, 2006, 09:31:44 pm »
teasely,

thank you, merci beaucoup, domo arigato gozaimasu!  Wishing you continued good treatment days (and days thereafter) and told my best friend what you wrote. I think she's counting on us going to lunch on Monday after my first treatment.

Laz, you devil.... you rawk!  Have I told you that lately? ;) 

Geeze, all these music choices... who will have time to even think about having my head zapped? :)


(thanks teasely! Hang tough and REALLY looking forward to the continued updates!)


Phyl
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Mark

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Re: New CK patient
« Reply #29 on: March 28, 2006, 09:32:56 pm »
Teasely,

Glad to hear your first CK treatment went so well. It is important now that you cap off your third and final treatment in the tradition of those of us who have had CK at Stanford in the past. Drive down the street from Blake Wilbur to the California Cafe for lunch or dinner and have a toast with a glass of wine. It's the only way to finish the experience  :D


Mark
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