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Author Topic: 18 Month Post-Cyberknife Update  (Read 4345 times)

fbarbera

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18 Month Post-Cyberknife Update
« on: April 08, 2009, 04:27:34 pm »
Hello All:

It's been a little while since I've logged on but I wanted to provide this group with an update of my status since my CK treatment in August 2007.  I recently received the results of my 18 month MRI and hearing test and all looks perfectly normal.  The hearing test shows that I have lost no hearing at all since my treatment.  Fingers crossed on that!  The MRI shows that my tumor is stable at around 2.5 cm, which is maybe slightly smaller than it was at the time of treatment.  Wish my friend was shrinking somewhat but stable is OK too.  In terms of my symptoms, I have been coasting for months, hardly thinking about my AN at all (hence my not logging in).  The past couple of weeks, I had a recurrence of some minor dizziness and face numbness, which seem to have receded.  It's always troubling to feel symptoms but Dr. Chang expressed confidence that these were ephemeral and would pass. 

Overall, great news.  I have updated my website (below) with the full details.  For those of you who want to hear all about how I chose CK over surgery or GK, the site describes my research process in detail, as well as my experience since my treatment.  Happy to answer any questions anyone might have, including any newbies out there researching their alternatives.

I hope all of you are doing well on your journeys!

Best regards,

Francesco

 
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anissa

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Re: 18 Month Post-Cyberknife Update
« Reply #1 on: April 08, 2009, 05:27:01 pm »
Always glad to hear that things look normal and good for you for having retained your hearing!  Best wishes to you.
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Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

mk

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Re: 18 Month Post-Cyberknife Update
« Reply #2 on: April 08, 2009, 06:26:52 pm »
Hi Francesco,

it is good to hear from you.  I am glad that everything is going so well. I have been referring lots of newbies to your website while you were away  ;)

Marianna
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GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

carter

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Re: 18 Month Post-Cyberknife Update
« Reply #3 on: April 08, 2009, 06:37:01 pm »
congrats!!!!
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Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

sgerrard

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Re: 18 Month Post-Cyberknife Update
« Reply #4 on: April 08, 2009, 07:39:02 pm »
Someone was asking about "young people" doing radiation recently. I thought of you. :)

Thanks for the update, Francesco. I just had my 18 month MRI last month as well; in a word, it was unremarkable. It would be nice if the AN would vanish, but I will take stable and unremarkable.

Congratulations.

Steve
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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: 18 Month Post-Cyberknife Update
« Reply #5 on: April 09, 2009, 12:21:24 pm »
hey Francesco! What can/do I say? :) Congrats on the fab news! You have truly been an inspiration to many, esp. those researching CK and for what you share.... continued wellness to you (you know it!) and please don't be such a stranger. Your knowledge and experience is very valuable here and hoping to see you more often! :)

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: 18 Month Post-Cyberknife Update
« Reply #6 on: April 09, 2009, 01:50:11 pm »
Francesco ~

Thanks for the 18-month update - and congratulations!  Its always such a pleasure to read of AN success stories, like yours, be they related to radiation treatments or surgery (or both). 

I echo Phyl's admonition to not be a stranger around here.  Your input is always valued and welcomed. 

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.

EJTampa

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Re: 18 Month Post-Cyberknife Update
« Reply #7 on: April 09, 2009, 06:33:57 pm »
Just a note to congratulate you on your 18 months of no growth after CK! 
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Tumbleweed

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Re: 18 Month Post-Cyberknife Update
« Reply #8 on: April 10, 2009, 12:22:48 am »
Hi, Francesco:

Great to hear from you! And I'm very happy to hear you're doing so well.

Soon after I was diagnosed and came to this forum, there were a few people whose knowledge and insight especially helped me to get a grip on having an AN and opened my eyes to CK at Stanford as a great treatment option. You were one of them. (Steve, too!) So I thank you again. It's great to read one of your posts here again.

Best wishes for continued healing,
Tumbleweed
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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

NL

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Re: 18 Month Post-Cyberknife Update
« Reply #9 on: April 10, 2009, 02:12:01 pm »
Hi Francesco,

It's so good to hear from you. Great news on the 18-month MRI! Perfect hearing and the AN smaller than when you were treated - that is really fantastic news. (In fact, I think that's a perfect reason for the LA group to get together to celebrate.  ;))

Congrats, Francesco!

Nancy L

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1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Anomar11

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Re: 18 Month Post-Cyberknife Update
« Reply #10 on: April 21, 2009, 07:45:52 pm »
Francesco,

I'm delighted for you.  Your detailed journal of the entire journey has been a tremendous help to me and many others, and I'm sure it will continue to be for those to come.  Wishing you continued good health.

Mona
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L An diagnosed 5/08 2.0 x 1.1 x 1.3 cm.  Cyberknife Stanford Drs Chang and Gibbs Nov '08.  One yr: 2.1 x 1.4 x 1.6, Two yr: 2.2 x 1.5 x 1.8, Three yr: 1.9 x 1.5 x 1.5, Four year 1.6 x 1.1 x 1.1, Six yr: 1.4 x .7 x .9

sher

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Re: 18 Month Post-Cyberknife Update
« Reply #11 on: April 27, 2009, 01:21:33 am »
Francesco,
So happy to hear you are doing well. Your website about your journey has helped me so much through this. I can go there and realize that I am not alone in all of this. I am starting to feel better and having more up days than down. Keep salsa dancing and thank you!!!!
Sher
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1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

suboo73

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Re: 18 Month Post-Cyberknife Update
« Reply #12 on: April 27, 2009, 04:15:41 am »
Francesco,  CONGRATULATIONS on the MRI, this is great news!
As one considering CK in the future, i follow those stories in particular.
I only struggle with the decision of 'when' though my AN is currently 'stable.'
This month, after the first 6 month MRI, the ENT says, '...so i will really be interested in the NEXT MRI, after one year."  ::)
AARRRGGGGHHH! - The dilemma of W & W mode, but i will live with it for now.

All my best for continued healing and great scans!
Sincerely,
Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W
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