Update on CK Stanford

[Anomar11]

Hi Everyone,
Thanks to many of your posted detailed experiences both here (Stanford) and other places, I pretty much knew what to expect.  I had my first treatment today and so far so good, about 5-6 hrs. ago.  Everyone very nice, and I know that I'm in some of the best hands in the country/world.  For peace of mind, the travel was worth it.  The tumor didn't grow.  Yippeeee!!  I have so appreciated the different perspectives from all of you, moderators, hero members and other frequent or non frequent posters.  I admire how this board has remained positive, as many of these types of things can get ugly.  I have pm'D A few and appreciated your help,  It's been cool for here, 60-65, but beats 30-35 at home.  Guess it's supposed to reach 75-80 starting tomorrow, then we go home.  Darn the luck!  We ended  up getting a car because by the time you pay transportation to/from airport it about breaks even.  We have tripped and toured a little, Monteray and train to San Francisco.  I am very grateful for this option of treatment and again for this board.  I know there's likely to be bumps, but I'll be informed. Later.  Mona

[windy]

Mona,

I just saw your posting.  I wish you the very best in your treatment.  Enjoy your experience in CA, as well.  Keep us posted!

Windy

[Tumbleweed]

Thanks for the update, Mona. You are truly in great hands at Stanford. There are never any guarantees with treating  this illness, but you have given yourself a good shot at a great outcome. Welcome to postie-hood!

Best wishes,
Tumbleweed

[sgerrard]

Hi Mona,

Have a great week at Stanford, short but sweet. Bye, bye, little AN. 

Steve

[jb]

Hey Mona,
Glad to hear you were finally able to get your treatment of choice, even if you had to travel a ways.  I'm sure they'll take good care of you.  Enjoy the trip and let us know how it goes.

JB

[Anomar11]

Thank you all so much.  Got home yesterday.  Took a bump in MN.  Plane had cabin pressure problems - had to fly lower than usual and take on more fuel.  The pilot came out and said anyone with "ear problems" may feel it.  Wanted to get home so bad, but didn't want to take any chances, so we took a bump for $300 voucher each, and used the time to just rest.  Otherwise, I had no problems with flying.  I did the sudafed and nose spray thing.  I'm very tired, otherwise, so far no side effects at all from CK.  Can't sleep but it's a relieved tired and I'm off work the rest of the week, so hope to get somewhat back on track.  After my last treatment, my husband went to San Jose to the innovation museum.  I sat outside the hotel in the warm weather, feeling very grateful.  .  Dr. Chang said my treatment plan was straight forward, something to the effect of a good treatment plan.  Music to my ears after being told by St. Paul they recommended surgery and soon.  The tumor is against brainstem but not pressing it and relatively away from the cochlea.  As previously said by others, he is very personable, as was Dr. Gibbs.  Apparently, they will soon publish another study since the one in 2005.  If I understand correctly, the results haven't changed re: tumor control and hearing preservation.  Very good news.   I'm very glad I went there.  I would have also gladly gone to OKC to see Dr. Medberry and his team, but this worked out better, and all things equal, the weather wasn't hard to take.    I truly feel, the service the doctors provide on the CK forum is remarkable this day in age.  It's snowing like crazy here.  Take care.   Mona

[Tumbleweed]

Congratulations and welcome to postie-hood, Mona!!!!!  It sounds like our experiences (tumor size and location, treatment at Stanford by Drs. Chang and Gibbs) are almost identical.

Make sure you get plenty of rest this week. Don't be surprised if you become extremely fatigued (although you may not). If you do, know that it will soon pass and you'll be feeling great again before you know it!

Best wishes,
Tumbleweed

[ppearl214]

Mona! You Postie Toastie!!!!!!!!! Congratulations!!!!!!!!!! Now, onward and upward to brain booger growth-stunting and time for wellness. Best wishes!

Phyl

[Pascale]

Congrats!!!

It was indeed an amazing experience when I was there too. Did you go to the museum located at Stanfod? It was cool to see all that after a week looking at the CK machine 

Anyways, enjoy!!!

[Anomar11]

Tumbleweed,  It does indeed sound like our experiences are very similar. 
Phyl, I look forward to being as far down the road as you, with the same positive results.
Both of you, amongst others were helpful when I was in the decision-making process.
Pascale, Didn't make it to the museum, but had a good tour of the campus and managed to do a few other fun things.
I was very tired last week.  Went back to work today, and my energy level has increased.  I think alot of it is relief of finally having it done.   I continue to have no other side effects, and have been able to exercise regularly.  I know it's early in the game, and often things don't pop up until further down the road, but I am amazed and grateful.  Mona

[pearchica]

Hey Mona: I am a stanford graduate - 1 1/2 years out and infrequent poster these days... (life post CK does go back to normal craziness and that's kinda of a shame)!  3 MRI's out, I have had no significant change in the tumor which is great!

Welcome to the club!  Happy Thanksgiving- Annie

[Anomar11]

Annie,

Thanks so much for your well wishes and I'm glad your treatment is showing success.  I' ve read many of your archived posts and some crack me up!, particularly as you talk about steroids.  I had no reaction from them which is good, as I don't know what I would have done with a bunch of energy holed up in a hotel room.  Also from your picture, you very much resemble an old friend of mine, could be her twin, although it's hard to tell from these little pictures.  Happy Thanksgiving to you.  Mona