Author Topic: My 2-1/2 yr CK treatment results are in!  (Read 12636 times)

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
My 2-1/2 yr CK treatment results are in!
« on: August 13, 2008, 06:06:01 pm »
PROCEED WITH CAUTION:  POSTER IS GOING TO SHOUT FROM ROOFTOPS IN GLEE!


Well, as many of you know, I had Cyberknife (CK) on my AN 2-1/2 yrs ago..... mine was growing really quick/fast, so I decided on CK once it hit the 1cm mark.  I had my CK done over 5 days for a total of 30 Gy. In my case, my ultimate/personal goal was to save whatever hearing I could, thus, I decided on a fractionated approach at a location that offers the only CK in the New England area (as of today, although, I am aware of another one forthcoming locally).

My treatment was in April 2006.  Now, 2-1/2 yrs later, I had my MRI this past Monday.  I am meeting with my radio team on Aug 25, but, I have the films and today I got the written report (I know, shame on me that I got all this BEFORE the dr even discusses with me).

*drumroll please*


For the past 4 MRI's done in 6 month intervals..... according to the report, we have officially stunted the brain booger's growth! YAY!!!!! No size change whatsoever and in 2 yrs, no growth!!!!!!!! (the ultimate goal of the treatment is to stop it dead in its track/core death).

For looking at the films, me sees a WHOLE LOTTA DARKNESS going on all inside the brain booger!  YAY!!!!!!!!!!!  I emailed a terrific MRI view over to one of the docs on the CK Patient Support Board/Forum and his comments... "so, looks like we got nothing to worry about"..... works for me.

I am also counting my blessings that my last audiology report shows my hearing at 92%, same as it was before my CK treatment, thus, my personal goal was achieved.

So, on 8/25, I will meet with the radio team, have them review everything but I have a sneaky feeling that they will be celebrating with me.

So, here's a hearty thank you to those that have been here with me since day 1, from first diagnosis and helping me get through the treatment (Hey, Captn Deb, I found that snake last week while I was driving to work... cut right in the path of my car on the road!)..... and to all those that have been there for me after-the-fact and tolerate me.

So, onward and upward. Will see what the docs say on the 25th but based on what I am seeing and reading.... I am a very happy lady!

As many of you may know, I deal with multiple, physical ailments that truly do affect my daily being, but, for me... to conquer this one, which is a small blip on the radar compared to all else I endure.... to know this is working.... I'll take it!

I also understand our realities in our AN journies that continued MRI's will happen... and I pray for no regrowth, although I keep realistic about this, but for this one day, I would like to celebrate... care to join me?

Thank you all for being there for me!

(ok, Jan and Lori, you may commence the hijack... thus, why this is posted in AN Community)

Phyl
« Last Edit: August 13, 2008, 06:27:17 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

elliemae

  • Full Member
  • ***
  • Posts: 122
Re: My 2-1/2 yr CK treatment results are in!
« Reply #1 on: August 13, 2008, 06:28:00 pm »
YAAAAYYY!

Very glad to hear your news, Phyl!

Elaine

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: My 2-1/2 yr CK treatment results are in!
« Reply #2 on: August 13, 2008, 08:30:48 pm »
YAY !!!


I would drink a toast to you but don't drink so sending you a flower ...by the way it is a rose... was trying to color it and making a mess of things so black and white will have to do ...imagine it pink  :)


.......... , . - . - , _ , .......
......... ) ` - . .> ' `( .......
........ / . . . .`\ . . \ ........
........ |. . . . . |. . .| ........
......... \ . . . ./ . ./ .........
........... `=(\ /.=` .........
............. `-;`.-' ............
............... `)| ... , ........
................ || _.-'| ........
............. , _|| \_, / ........
....... , ..... \|| .' .............
....... |\ |\ , . ||/ .............
.... , ..\` | /|., |Y\, ............
..... '-...'-._..\||/ .............
......... >_.-`Y| ..............
.............. , _|| ...............
................ \|| ...........
................. || ..........
................. || ...........
................. ..........

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: My 2-1/2 yr CK treatment results are in!
« Reply #3 on: August 13, 2008, 08:34:06 pm »
Phyl~
Well, I wasn't here from Day 1, but I am glad that I am here now - my life has been truly blessed by having you in it.

YOU RAWK!!!!!!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: My 2-1/2 yr CK treatment results are in!
« Reply #4 on: August 13, 2008, 08:42:24 pm »
Phyl, you're awesome! Congratulations....
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

jerseygirl

  • Hero Member
  • *****
  • Posts: 801
Re: My 2-1/2 yr CK treatment results are in!
« Reply #5 on: August 13, 2008, 08:58:08 pm »
Phyl,

That is just great! I am joining you in all this shouting!


          Eve
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.

Sue

  • Hero Member
  • *****
  • Posts: 1934
  • Que sera, sera
    • My Blog
Re: My 2-1/2 yr CK treatment results are in!
« Reply #6 on: August 13, 2008, 11:27:23 pm »
Couldn't be happier for you, Phyl.  Having one less thing to worry about helps with everything else, I do believe. Having said that in a calm, rational voice, you will now hear unrestrained shouting, laughing and see Sue trying to do the Happy Dance. Wahoo!  Hooray!   ;D ;D ;D

Sue in Vancouver USA


Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: My 2-1/2 yr CK treatment results are in!
« Reply #7 on: August 14, 2008, 05:39:48 am »
well, a humbled thank you to you all... for my "pink" rose..... for the kind words.... and the virtual drinks!  Me feels a martini is just what the doctor ordered (hopefully, he's buying as well!) and as for you all.... you know I'm sending the healing huggles and wellness wishes to you!

*does happy dance around desk..... trips over feet... lands on face*

ow!  Great... the nose job I didn't want to pay for!!!! :)

(Thanks again all!)

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

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: My 2-1/2 yr CK treatment results are in!
« Reply #8 on: August 14, 2008, 07:39:29 am »
Wonderful news, Phyl!  So glad your AN death continues.  I'll jump up and down for you as soon as I've had my morning Coke!

Thanks for sharing the good news - you know so many here can benefit from it.  Hope all other things are going ok with you,

Cindy
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

Mickey

  • Hero Member
  • *****
  • Posts: 753
Re: My 2-1/2 yr CK treatment results are in!
« Reply #9 on: August 14, 2008, 07:48:16 am »
Great News! Thans for sharing your experiences. It help so much to see all whats going on especially when there is something nice happening. Wishing you the best, Mickey

HeadCase2

  • Hero Member
  • *****
  • Posts: 778
  • Carpe Grog
Re: My 2-1/2 yr CK treatment results are in!
« Reply #10 on: August 14, 2008, 08:14:34 am »
AWESOME!

« Last Edit: August 14, 2008, 08:16:25 am by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: My 2-1/2 yr CK treatment results are in!
« Reply #11 on: August 14, 2008, 08:59:40 am »
Phyl, I agree with Michael Phelps in the picture above!

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.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: My 2-1/2 yr CK treatment results are in!
« Reply #12 on: August 14, 2008, 09:25:59 am »
Hi Phyl,

Great news!  Having "nothing to worry about" are beautiful words!  Congratulations!

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Captain Deb

  • Hero Member
  • *****
  • Posts: 3316
  • Phearless Phyll and Captain Deb!
    • Captain Deb
Re: My 2-1/2 yr CK treatment results are in!
« Reply #13 on: August 14, 2008, 10:59:30 am »


Beanie and Sadie are ecstatic and so am I!!!

We did it!!!

We killed it dead!!!!


Death to the nasty Brain Booger!!!!!

Congrats, Phyll.  Now let's get to work on the rest of you!

Big hugs and smooches to you and the Cheeky Bloke from Me, Sadie, Dr Love and the Grandscallywags

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Omaschwannoma

  • Hero Member
  • *****
  • Posts: 777
  • Life is a journey, not a destination
Re: My 2-1/2 yr CK treatment results are in!
« Reply #14 on: August 14, 2008, 12:06:21 pm »
Phyl,

I would like to extend my heartfelt congratulations to you regarding your awsome report!  I'm very happy for you! Prost to more good years ahead!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear