Author Topic: Mark's 4 year update  (Read 10962 times)

Mark

  • Hero Member
  • *****
  • Posts: 676
Mark's 4 year update
« on: December 21, 2005, 05:27:32 pm »
I think I'm one of the "older"  :) members of the "CK club" on the board, having been treated in November 2001. One of the reasons that I have opted to stay involved the past few years with this forum was to provide updates on my progress ( good or bad) and be of some help to those just starting their journey. So here goes:

Met with Dr. Chang this morning to review the MRI and Audiogram results. Good news always results in a short appointment  ;D and this was a quickie as we spent more time discussing my triathlon experiences this year. Highlights were:

1) Tumor status : The AN is still showing as quite dead and had actually shown some additional shrinkage. This was a lttle (pleasantly) surprising to Dr. Chang as he sees most AN "carcasses" stabilize in size after 3 years. The AN at time of treatment was slightly larger than 2.1 cm and is now around the 1.5 cm size

2) Facial nerve : I had no function problems prior to treatment and the facial nerve continues to be 100% OK

3) Hearing: While I had moderate to severe high frequency loss going into treatment, I still had approximately 90% speech recognition scores. Surgery for an AN my size, even with the sub occipital approach left virtually no chance of saving any usable hearing. While preserving hearing was not as important as killing the tumor and saving the facial nerve, the better possibility of doing so with FSR certainly made that option more attractive to me. Fortunately, my most recent audiogram shows all aspects of hearing at pre-treatment levels and speech recognition in the AN ear was at 100% for the second year in a row.


Needless to say, I couldn't be happier with how things have gone in my treatment process. certainly , for me, this is an early Christmas present  :D

Now for the "bad" news. I will not have an update in 2006. Given the positive results having been maintained for 4 years, Dr. Chang has moved me to the two year schedule, so no MRI until December 2007. Yippee  ;)


Here's wishing everyone a happy and safe holiday!

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

jamie

  • Sr. Member
  • ****
  • Posts: 300
Re: Mark's 4 year update
« Reply #1 on: December 21, 2005, 05:32:11 pm »
Awesome news Mark! Congratulations on graduating to the 2 year class, lol. Can't wait to be there myself. Have a great holiday!
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Larry

  • Hero Member
  • *****
  • Posts: 1464
  • Scallywags Rule
    • Chronologer of the PBW
Re: Mark's 4 year update
« Reply #2 on: December 21, 2005, 07:29:46 pm »
Congrats Mark.

As a possible patient for FSr at a future point. Your news provides me with a lot of confidence. Can you post the number of treatments you had and the GY levels of radiation at each session.

cheers



Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Mark

  • Hero Member
  • *****
  • Posts: 676
Re: Mark's 4 year update
« Reply #3 on: December 21, 2005, 08:16:55 pm »
Larry,

My CK treatment was 3 sessions over consecutive days at 6 GY / day for a total 18. This is the protocol that Stanford has been using since 1999 according to Dr. Chang.

Best wishes

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

okiesandy

  • Sr. Member
  • ****
  • Posts: 273
Re: Mark's 4 year update
« Reply #4 on: December 22, 2005, 07:49:30 am »
What a wonderful Christmas present. I'll bet you have a simile that can't be wipped off. This is exactly the results I want. I am almost as excited about your results as I would be if it were me.

Continued Blessings,

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

shoegirl

  • Sr. Member
  • ****
  • Posts: 311
Re: Mark's 4 year update
« Reply #5 on: December 22, 2005, 12:31:18 pm »
Mark,

Congratulations! I am so happy to hear that your CK continues to be a success.  I am hoping for the same results!

I am glad you have stuck around, your posts  are always informative and helpful.  They made a real difference for me while I was researching my treatment options.  Thank you!

Best Wishes!  And Happy Holidays!
Suzanne
left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

SuzeAN

  • Jr. Member
  • **
  • Posts: 78
Re: Mark's 4 year update
« Reply #6 on: December 22, 2005, 01:07:51 pm »
Mark, great news!!

I hope to get the same in the upcoming years!  You've  been an inspiration! Thanks for all your advice and information on the site!

Cheers,
Suze R
2.5 cm, left side
CK-Barrows 10/05

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: Mark's 4 year update
« Reply #7 on: December 29, 2006, 04:45:31 pm »
Congratulations Mark!!  This is such an encouraging update that many of us are more hopeful than ever!

You have been so helpful in my own personal journey with AN.  This calls for a mega toast at our get-together next weekend!!!

Cheers,
Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Mark's 4 year update
« Reply #8 on: December 29, 2006, 04:52:19 pm »
I'm thrilled to see this get bumped up... as it's a reminder for those of us in the wait mode to see if our radio-surgery has worked..... that "Virginia, there really is a Santa Claus!".

Mary, pls give Mark (my CK mentor) a BIG huggle for me... and this thread remains as inspiration for me to stay mentally strong as I wait for the radiation to work.

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

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: Mark's 4 year update
« Reply #9 on: December 29, 2006, 05:02:14 pm »
Absolutely, Phyl!   :-*

YES!!!  Huggles, cheers, toasts, food, laughters, pictures are in order.  What else have I forgotten?  ;)

*so excited about brunch next Sunday.  he he he!!!*

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7447
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Mark's 4 year update
« Reply #10 on: December 29, 2006, 08:31:31 pm »
Hmmmmmmmm... lemme see.... hmmmmmmmm.......  how about.... dang it... short term memory got me again. ;)

Have a fab time!
Phyl

Absolutely, Phyl!   :-*

YES!!!  Huggles, cheers, toasts, food, laughters, pictures are in order.  What else have I forgotten?  ;)

*so excited about brunch next Sunday.  he he he!!!*

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

BevM

  • Jr. Member
  • **
  • Posts: 81
Re: Mark's 4 year update
« Reply #11 on: December 30, 2006, 11:05:50 am »
Congratulations Mark!!  Its great to hear of your success.  As you know,your posts have helped me in my pretreatment decision making and my ultimate treatment at Stanford.

I appreciate you continuing to post as some of us are following in your "footsteps" and hoping to experience your success.

Wish I could join you all in San Diego!  Maybe I can join a West Coast gathering in the future.

Blessings,

Bev

 


anything
anything