Author Topic: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona  (Read 46141 times)

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #60 on: June 04, 2008, 07:27:19 am »
 :D :D :D :D

Thanks Steve.

This Mornings Update:

I think I am having some side effects kick up, but it went well and I am sooooooo happy to have it over.

I guess I am having some side effects kick up. ??? I do have escalated dizziness issues. This brings on some occasional nausea.  My hearing is not as good, I can hardly hear a thing, but it was terrible to begin with. I am not sure if it is connected, but I have pain in the bones of my face mostly around my eye - on my AN side. There is no pain that I can detect where the tumor is.

At the same time I am doing a happy dance to be a postie. The dance is a little weird, trying to hold on to anything to keep the dance steady.

Take care all,

Mary 8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

cindyj

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #61 on: June 04, 2008, 02:42:12 pm »
Hey Mary,

Hope you're feeling better this afternoon...

rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #62 on: June 04, 2008, 10:01:23 pm »
Mary,

It sounds like you are having a little swelling. Try some Ibuprofen. If you continue to feel poorly, ask your doctor if you should try a short course of a steroid.

Hope you feel better soon.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #63 on: June 04, 2008, 10:03:12 pm »
Mary -

hope Steve's recommendation works for you.

Please let us know how you feel tomorrow.

Hoping it's a lot better  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #64 on: June 05, 2008, 06:43:30 am »
Good morning,

Can you have swelling this soon after CK? I thought it was 3 - 8 months. I am taking naprosyn for an unrelated issue. It is an anti-inflammatory, so I don't think I can ibuprofen. Thank you Steve for the recommendation. I am still real dizzy. I was dizzy going into this so I don't know if that is just worsening. My hearing was already shot, but it has worsened, since I did the 1 day CK, we weren't trying for hearing preservation. I also have the ache around my eye. Seems like my eye is playing funny tricks, too. Focusing is a little challenging. Seeing some movements on TV make me want to go cross eyed. I feel great, just these little annoyances. Dizziness is my biggest complaint. I will call today and ask the wonderful nurse there.

I want to get out and swim but the pool is too cool. Phoenix area is having a cooler spring than normal. I love it but I think the exercise will be good for me and I don't want to turn into a popsicle to get my muscles a work out. Somehow I feel like I will feel better if I can do that. I do have the energy.

Thank you all for your support and encouragement. It is really hard to express how much it helps me. :)

Take care! 8)

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #65 on: June 05, 2008, 08:49:09 am »
Hi Mary,

I think it is normal for GK patients, and sometimes CK, to get a little swelling reaction right after the radiation. This is not the "death to ANs" swelling that will occur later, around 3-8 months. It is an immediate reaction to the radiation, and usually wears off in a week or so. I would think any anti-inflammatory would help, and it is probably not a good idea to mix and match, so stick with your naprosyn and/or call that nurse. Hope you feel better soon.

Swimming. Now there is an idea I remember from last year, but it sure hasn't come up yet this year. Where is summer?  ???

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #66 on: June 05, 2008, 02:27:58 pm »
Thank you, again, Steve!  :)

Here is the UPDATE:

Since I changed from 3 to only 1 CK treatment, I think you had a great point. It would be like having GK then. I did call the hospital and talked to the CK nurse. She had me call my Dr. I left a message and he called back quickly. Hooray! I told hi briefly my symptoms since about 24 hours after CK. I was quite dizzy before but now I have extreme dizziness worsening at night. I am using a cane or my husband to get around. I have the headache (faceache?) around my right eye. My bad hearing is worse as is my tinnitus. Othwerwise, I am fine. He asked numerous questions and said I needed to start steroids today and he would call them in right away. You have to love it when the system works this easily!

On a side note, my doctor mentioned he had read my post on this site. He is obviously dedicated to his work. He had told me about this site the first time I saw him. I am sooooo lucky! It is always good when you make a decision, that you are pleased. I never expected treatment to be without some issues somewhere. It is how the issues are handled when they arrive.

I have taken my first dose of steroids and expect to feel better before long. I call him when I have finished all the medication.

Thank you again, Steve! (By the way do I get a hat???  ;D If so I want a red one, but if it is green, that is my husbands favorite color  :D :D :D)

Take care!

Mary




Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #67 on: June 05, 2008, 05:51:38 pm »
Mary -

I'm sorry you still aren't feeling well, but I'm very glad you called the doctor's office and that your doctor is taking care of things.  I'm hoping you'll be feeling much better soon.

Doctors on the forum?!!  Sam Rush was the only one I was personally aware of and he doesn't treat ANs - but he did diagnose one recently (Yeah, Sam)  :)  Is your doc a lurker or is he a registered user?  It doesn't really matter, I'm just curious.  Either way, I say good for him; it's very impressive that he cares enough to take the time (and I'm not just kissing up because there is a chance he might be reading this)  :D

I tell my doc every chance I get what a great resource the ANA has been for me and how helpful I have found this forum - he probably thinks I sound like a broken record.  Is that an outdated term?  Do people even know what a record is these days  ???  I know my kids don't.  Guess my age is showing  ::)

As for the hat - Steve is going to have to start knitting 24/7 in order to keep up with the high demand.  Tip to Steve - just purchase some hats to pass out at the symposium and say you knitted them.   They'll never know - and I'll never tell ;)

Jan 

 
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #68 on: June 06, 2008, 09:42:06 am »
Hi everyone,

Today has started better. I the the steroids have begun to help. I am feeling peppy ( :D - steroid high) and even went for an early morning walk. The pool was only 77°, so still no luck getting in a swim. I am still a little dizzy but with a cane on one side, and Weldon on the other I managed a nice stroll. The real test is later today to see if symptoms worsen like they usually do through out the day. At least this time they are starting at a more manageble level. My headache is mild and has moved to the back of my head.

My only new issue is my right eye. I woke up and I thought my glasses were badly smudged. I took them off and realized it is my eye. It had a bad haze. I put in eye drops and an hour later, it was still there. I posted a query on the CK site to see if it had any connection. It does seem to be clearing up now. Maybe just a strange anomoly? Any one else had this?

Have a great day all!

Mary

Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

elliemae

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #69 on: June 06, 2008, 12:22:35 pm »
Hi, Mary
I've been remiss in cking in on the forum and up on you! I hope the steroids help you with these side effects - and you can get off them soon!  (Are they the "deca-crap" as I've seen Phyl call them??)

You definitely seem to be in good hands all around!

Elaine

MaryBKAriz

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #70 on: June 06, 2008, 12:28:39 pm »
Hi Elaine,

I was spared the deca-crap and have been put on prednisone. I don't know what the difference is, but I do know I am feeling PEPPY today  ;D.

Take care,

Mary


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

elliemae

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #71 on: June 06, 2008, 12:48:46 pm »
Glad to hear it, Mary!
I took prednisone for another ailment...I don't remember those peppy feelings, though!!!

I'll have to remember to request that, if I EVER make up my mind to do the radiation!!
Elaine

sgerrard

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #72 on: June 06, 2008, 08:15:57 pm »

Tip to Steve - just purchase some hats to pass out at the symposium and say you knitted them.   They'll never know - and I'll never tell ;)

Except you just did, Jan. Thanks a lot.  >:(  ;D

Mary, it sounds like you like the prednisone. Just don't get too into it, remember you will have to taper off and stop at some point.  ;)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ppearl214

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #73 on: June 10, 2008, 05:52:22 am »
Mary,

If you are on the 'roids, I need my house cleaned!!!!!!!!!!!!!!!!!! :D


"Day by day, inch by inch"..... I know you have educated yourself on things that could/could not (not "would/would not" but could/could not) crop up... and tickled you are on top of it and that the team at Barrows is right there with you (I would expect nothing less than that from them!).  Steve is on the money and I'm sending the hugglez to you......... hang tough.... and now time for that sucker to die its fugly death.....

{{{{{HUGGLEZZZZ}}}}

Guess who? :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Ck - The Great Cyberknife adventure here at BNI in Phoenix Arizona
« Reply #74 on: June 10, 2008, 08:09:16 am »
House cleaning? - mine could use it too!  So, if you're in my neighborhood, please stop by  ;)

Hope you're feeling much better, Mary.  And here's hoping that "Goldie" dies very soon.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

 


anything