Author Topic: CK - Ready, Aim, Fire!  (Read 2532 times)

TJ

  • Sr. Member
  • ****
  • Posts: 282
  • 1.2 cm AN right side, CK November 2010
CK - Ready, Aim, Fire!
« on: November 05, 2010, 03:30:51 pm »
Hello All,

Face Mask.......Check
Cat Scan.........Check
MRI................ Check

Now it is time to shoot this sucker and hopefully kill it.  CK will starts next week, then as all who have had it knows the waiting game.  Will I have side effects, when will they hit?  And most of all will it die?  I am feeling pretty good about getting this part of my life over.  I know at first there will be swelling which can cause a whole lot of different things.  As those that have gone before me, we all learn to deal with whatever happens.

Thanks for all the information that everyone has posted.  It certainly helped make my decision for CK much easier.  Soon to be in the "post" treatment group.

TJ

JLR

  • Sr. Member
  • ****
  • Posts: 322
Re: CK - Ready, Aim, Fire!
« Reply #1 on: November 05, 2010, 04:05:06 pm »
Hi TJ, Glad all your prep is complete.  Mine as well. Last week I completed all three steps too.  So, please let me know how you are. Of what I have read not everyone has a side effect from the CK I am hoping that you and I have completely uneventful sessions..except of course the success of the radiation.  Take care, stay well, and please keep me posted. (my CK starts in 3 weeks) JLR

james e

  • Hero Member
  • *****
  • Posts: 670
  • 72 years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: CK - Ready, Aim, Fire!
« Reply #2 on: November 06, 2010, 11:48:36 am »
..."we all learn to deal with what ever happens." Wise words. You said you will be glad to get this behind you...I suppose you mean the treatment. My sermon today is about attitude. I am 61 years old and always imagined I would be healthy, never run out of energy, always have brown hair, etc...but "stuff happens." I am the healthiest man you ever met, but in an 8 month period I had a stroke, heart surgery and an AN. My life was turned up side down...and I will never "get this behind me." But how do you survive these major changes in your life? Go back to your "deal with ever happens," and you will live a wonderful life.

Any treatment you get will have some impact on the balance of your life. It is probably fair to say that MOST of here have some disability from being treated, but after being on this site for almost a year, I can tell from reading the posts, who is happy in their life, and who have accepted their outcome as a burden. None of did anything, or forgot to do something, that caused us to get a tumor. It was just one of the cards we got dealt. I read about people running marathons, ridding horses, having more children, improving their lives...and some go into their rooms and cry. Your post has inspired me today. I hope you have a successful treatment, and "learn to deal with ever happens." Life is a good thing...don't waste it! I'm gonna go hug my wife!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: CK - Ready, Aim, Fire!
« Reply #3 on: November 06, 2010, 11:53:18 am »
TJ -

I didn't have CK and don't know all the specifics, so I won't even attempt to answer your questions.  I'll leave that to the "experts" here on the Forum.

Just wanted to say good luck.  I'll be thinking of you next week and hoping things go well.

Please keep us updated,

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

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: CK - Ready, Aim, Fire!
« Reply #4 on: November 10, 2010, 09:04:15 pm »
Good luck, TJ! I had CK and it was of tremendous benefit to me. I feel so much better since getting treated.

Where are you going for your CK treatments?

Best wishes,
TW
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

TJ

  • Sr. Member
  • ****
  • Posts: 282
  • 1.2 cm AN right side, CK November 2010
Re: CK - Ready, Aim, Fire!
« Reply #5 on: November 14, 2010, 08:51:12 pm »
I have started the sessions.  I will have total of 5  in hopes with going with a lower dose they can save the hearing in that ear.  The AN is touching the cochlea which does not handle radiation very well.

I am having it done by Dr Sinha and the team of doctors at El Camino Hospital in the San Francisco Bay Area.

TJ

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: CK - Ready, Aim, Fire!
« Reply #6 on: November 14, 2010, 08:53:43 pm »
Fire away, TJ! And 'bye 'bye toomah!  ;D

Best wishes for a great outcome,
TW
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

petgroomer

  • Jr. Member
  • **
  • Posts: 99
  • Love to live... Live to love...
    • Vagal Schwannoma
Re: CK - Ready, Aim, Fire!
« Reply #7 on: December 07, 2010, 09:42:51 am »
Ha ha ha.. loved this post.  I could have written it myself!  Good going on your treatments and I look forward to following your posts as they help me as well :)
Rhonda
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

kareno

  • New Member
  • *
  • Posts: 48
Re: CK - Ready, Aim, Fire!
« Reply #8 on: December 07, 2010, 10:43:22 am »
Hi TJ:

Just wanted to send positive thoughts your way and wish you all the best with the CF treatment. 

Karen
Caregiver:  Husband 3.0cm diagnosed 1/10, Retrosigmoid Surgery 4/10 Tufts Medical CTR Boston, Dr. Carl Heilman-Exceptional Surgeon