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Author Topic: CK and trip to Stanford scheduled !  (Read 6148 times)

free2be

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CK and trip to Stanford scheduled !
« on: August 21, 2010, 12:13:31 pm »
Well...I have a schedule with Stanford for Dr. Steven Chang and Dr. Scott Soltys to do Cyber Knife treatment. They will also be doing a diagnostic MRI to check my Pituitary gland to ensure there's no tumor in it, per my endocrinologist's request (related to my Addison's Disease).

My appointments start Monday Sept. 27 with simulation on the 28th and 3-sessions (3 days) of CK treatments starting Wed. Sept. 29th. I will fly back to GA October 2nd.

I'm glad the decision and arrangements are made, but it does seem even more "real" now, which is making me a little anxious :o
I'm not really concerned about the procedure itself, though somewhat apprehensive about the months that follow treatment. I'm doing my best to tell myself I will not have exacerbated symptoms and will feel like a million bucks (which would be a first!).   

Hope everyone is doing well.

Connie
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Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

6pick

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Re: CK and trip to Stanford scheduled !
« Reply #1 on: August 21, 2010, 06:36:14 pm »
Fabulous, Connie. Keep us posted.  :D
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5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

jerseygirl

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Re: CK and trip to Stanford scheduled !
« Reply #2 on: August 21, 2010, 07:34:51 pm »
Good luck, Connie, hope everything works out.

             Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

leapyrtwins

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Re: CK and trip to Stanford scheduled !
« Reply #3 on: August 21, 2010, 09:57:59 pm »
Good luck, Connie.

You're in great hands  ;D

Best,

Jan
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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

ppearl214

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Re: CK and trip to Stanford scheduled !
« Reply #4 on: August 22, 2010, 07:36:40 am »
Connie... best wishes and you must feel some sort of relief knowing the decision-making process monkey is now off your back.  Will be cheering you on and hoping my good fortune with CK rubs off on you! :)

Best wishes!
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: CK and trip to Stanford scheduled !
« Reply #5 on: August 22, 2010, 01:07:17 pm »
Connie ~

Congratulationa!  My hopes, thoughts and prayers are with you.   :)

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tumbleweed

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Re: CK and trip to Stanford scheduled !
« Reply #6 on: August 22, 2010, 03:26:32 pm »
Connie, good for you for giving yourself the gift of traveling to the best treatment facility for CK. You'll be glad you did. Stanford and Dr. Chang are absolutely fantastic. You will receive the best, most-expert care possible.

Best wishes,
TW
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L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

crivers

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Re: CK and trip to Stanford scheduled !
« Reply #7 on: August 22, 2010, 04:22:44 pm »
Connie,

so glad to hear the date is scheduled - best wishes for a smooth recovery from treatment
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Rt side AN - discovered
Jul 09: 6mmx4mmx4mm
Feb 10: 8mmx5mmx5mm

CyberKnife - Stanford - Dr. Chang and Soltys
April 5 - 9th, 2010

Tisha

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Re: CK and trip to Stanford scheduled !
« Reply #8 on: August 23, 2010, 07:20:09 am »
Good luck!  Plan to do some sight seeing while you are th ere.  Most likely, you will feel just fine when you are in the doc's office.  We went to Monterey, Sausalito, Muir Woods, san Fran tour.  Also, just walking along the pretty Palo Alto Univeristy Drive, sitting out and having a drink on the sidewalks was fun!
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1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

free2be

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Re: CK and trip to Stanford scheduled !
« Reply #9 on: August 23, 2010, 07:20:48 pm »
Thanks to everyone for the well wishes and support. You are all great. Yes, Tisha, we are scheduled to go 2 days early and get in some SF treats before hand and hopefully some side trips in between appointments. That part I can look forward to.

Connie
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Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Tisha

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Re: CK and trip to Stanford scheduled !
« Reply #10 on: August 24, 2010, 08:05:40 am »
We did ALOT during the week of treatment.  I was only in the facility for appts, waiting, radiation, the whole kit and kaboodle for about 10 hours in 5 days.  We went and did much of our sightseeing during that time.  Don't know if you like adult beverages (grin), but there are no drink restrictions at all.  Had radiation at 10:00 one morning, having a margarita in Monterey by 2:00! 
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1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Lizard

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Re: CK and trip to Stanford scheduled !
« Reply #11 on: August 24, 2010, 08:22:37 am »
Connie,
I'm so happy you made your decision and have your date set.  Not too long to wait which is always a good thing.
You are in very capable hands!
Liz
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

free2be

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Re: CK and trip to Stanford scheduled !
« Reply #12 on: August 24, 2010, 05:05:19 pm »
Thanks to all, again. Tisha, a margarita in Monterey at 2:00 (or 1:00 or 3:00...) sounds good to me. Thanks for the tip.
Connie
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Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

ppearl214

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Re: CK and trip to Stanford scheduled !
« Reply #13 on: August 24, 2010, 05:33:32 pm »
Quote from: free2be on August 24, 2010, 05:05:19 pm
Thanks to all, again. Tisha, a margarita in Monterey at 2:00 (or 1:00 or 3:00...) sounds good to me. Thanks for the tip.
Connie

Have one for me as well as I'll be there in "spirit". See if "Mark" is around then as well.  Have met him and his lovely wife.... he's just fantastic. Over 8+ yrs post CK for his AN, looks great, you'd never know and was also treated at Stanford.  Just a thought..... (HI MARK!)

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

6pick

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Re: CK and trip to Stanford scheduled !
« Reply #14 on: September 22, 2010, 05:02:58 pm »

I was thinking about going in after December, then decided that sooner would be better.  So my CK and trip to Stanford is now scheduled for the week of October 11. I am looking forward to frying this uninvited guest.

 :D
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5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change
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