Author Topic: Decided!!!!  (Read 2934 times)

sher

  • Full Member
  • ***
  • Posts: 173
Decided!!!!
« on: September 08, 2008, 09:51:55 pm »
I am meeting with Dr Rodgers from Salt Lake Cyberknife on Friday to set up treatment. Dr. Daspit from Barrows knows him and has worked with him and Dr. M on Cyberknife forum trained him. He hasn't done very many AN's at his clinic but has done elsewhere and lots of GK. I am worried about the rate of growth the last 4 months and am hoping that it won't continue after CK. Thanks all for just being here for me to tell... No one understands the emotional roller coaster that I am on. Husband started a new job and is totally consumed in it... so feeling quite alone these days.
Thanks for being here,
Sherry
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

28Lisa

  • Full Member
  • ***
  • Posts: 102
  • pre opt
Re: Decided!!!!
« Reply #1 on: September 08, 2008, 10:48:12 pm »
hi Sher Sher, we're all here for you and we know what you're going through....

Stay Strong

(((((((((((((((((((hugs)))))))))))))))))
A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: Decided!!!!
« Reply #2 on: September 09, 2008, 12:26:58 am »
Congratulations, Sherry, on choosing CyberKnife. That's a great choice. You're going to do just fine.

Best wishes,
Tumbleweed
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

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Decided!!!!
« Reply #3 on: September 09, 2008, 05:51:15 am »
Sher,

You know I am cheering you on.... meeting wioth the docs to discuss, face to face, will help you get the process completed (ie: your decision making process).  We're here for you and please keep us updated on how the appt goes.

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

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Re: Decided!!!!
« Reply #4 on: September 09, 2008, 06:26:29 am »
Hey Sher,
Good for you.  Now you can go one to the next phase.  Nothing is quite as bad as having to decide how to treat your AN. Now that you've done that, your roller-coaster ride should even out a bit.
All best,
Marci
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.

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: Decided!!!!
« Reply #5 on: September 09, 2008, 06:31:20 am »
I know you are SO relieved to have the decision made!  Congratulations!  Keep us posted on your treatment dates and how you're doing.

Take care,

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

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: Decided!!!!
« Reply #6 on: September 09, 2008, 06:49:04 am »
Hi Sherry,
Now that you've made the hard decision I hope you start feeling a little more relaxed.  If Dr. Medbery trained your doc in Cyberknife I'm sure you're in good hands.  I don't have any one-on-one experience with Dr. M but always had a good feeling about him.  You are not alone -- we are all here to help and support you in whatever way we can.  My husband was very  distant before my surgery and I thought our marriage was in trouble and didn't know why.  It turned out that he was feeling even more overwhilmed that I did.  He is such a control freak and he knew my AN and choice of treatment was not something he could control.  He was actually much better after my surgery.  Although it hurt me that he was not there for me when I felt I needed him most he is trying to make up for it.  I hope your husband realizes how much you need his support right now and steps up.

Best wishes,
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!

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Decided!!!!
« Reply #7 on: September 09, 2008, 07:44:50 am »
I am worried about the rate of growth the last 4 months and am hoping that it won't continue after CK.

That is something that CK is pretty good at, hitting about 98% or so control of growth. You might get a little swelling, but the AN is doomed now. Congratulations on making your treatment decision.

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.

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: Decided!!!!
« Reply #8 on: September 09, 2008, 09:16:12 am »
Hi, Sherry:

I just want to add my congratulations on your decision to have the CyberKnife treatment. 

The (specific) treatment decision is often the hardest one to make and you've now achieved that, so the rest should a bit easier.  Your husband's inattentiveness to your situation  is unfortunate and appears to be as much a matter of timing as anything else.  I trust he'll become more focussed on you as he gains confidence in his new job, your treatment date draws closer and the reality of your needing his support becomes obvious.  As Steve correctly pointed out, the CK should certainly halt any growth and, one hopes, begin the process of necrosis (tumor cell death).     

You know you have friends all over the country Sherry,thanks to the internet, the ANA website and these forums.  Lean on us as much as you need to, we'll support you all the way, and you can count on us.  :)

Jim
« Last Edit: September 09, 2008, 12:39:10 pm by Jim Scott »
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.

goinbatty

  • Sr. Member
  • ****
  • Posts: 288
Re: Decided!!!!
« Reply #9 on: September 09, 2008, 12:22:34 pm »
Congrats!!!!  If you're like me, just having made the decision felt like the weight of the world had been lifted off my shoulders.  On to the next step of treatment.  Keep us udpated. 
Take care,
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

sher

  • Full Member
  • ***
  • Posts: 173
Re: Decided!!!!
« Reply #10 on: September 09, 2008, 02:08:06 pm »
Thanks everyone for your supportive words.... I wish I could meet each one of you. We need to have an AN convention or something.
Sher
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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Decided!!!!
« Reply #11 on: September 09, 2008, 02:21:32 pm »
I wish I could meet each one of you. We need to have an AN convention or something.


Funny you should mention that.  I noticed just now that the ANA was started posting details of the 2009 ANA Symposium on the main page of this website.  Hope to meet lots of you there  ;D

Congratulations, Sher!  Making your treatment decision is often the hardest part of the whole AN process.  Bet you feel somewhat relieved  ;) 

Don't forget to put your treatment date(s) on the AN Calendar so we can all wish you well again prior to the big day.

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