Author Topic: One month post CK treatments  (Read 2004 times)

hevreh

  • New Member
  • *
  • Posts: 16
One month post CK treatments
« on: August 20, 2009, 08:04:33 am »
On 8/17, two MRIs of my head and internal auditory canal determined the affect on the AN's post-op (5) CK treatments.  My doctors (Mahadevan/Wong) at BIDMC in Boston are pleased with the process as swelling and the tumor’s size are in check. I am most relieved to not be prescribed back on the steroid Decadron whose side-effects would have put me in “outer space” again with no sleep, a ravenous appetite, irritable, easily agitated and not one to induce interest to be around. I could not be in my own skin. Although balance is compromised with exertion, it should improve. When ambient noise is around, it is still difficult to hear but pre-treatment hearing levels are expected to be preserved. Tinnitus and facial tics did not result.  When infrequent mild headaches occur I take OTC ibuprofren and a power nap as I fatigue easily. These residuals should soon also be gone.

I am now a “Post-Toastie” and will be monitored every six months by MRIs until confirming the tumor's growth has been arrested or hopefully shrunk.  I anticipate with no further symptoms, these recent protocols will become a brief detour in my life’s journey. Yet prior to sharing this, I read others' post-radiation experiences on this ANA site to inform me symptoms in some months or years out should not be unexpected. Now that's a bummer!!

 

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7449
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: One month post CK treatments
« Reply #1 on: August 20, 2009, 08:20:08 am »
So... are we going to FINALLY do that dance in Boston or are we going to see you at the Brunch in Worcester Oct 25? :)

congrats on the news! You sounded great on the phone when we last spoke and sounds like everything is on target! I see "Dr M" and Wong on Sept 3 and will be curious to see what they say about me at this point (3.5 yrs later).  "Dr M" will give me a toothy grin as always (but we still need to fatten him up!) and I will go into hot debates with Wong, as always :)  It's always fun to harrass your neuro-onc!

Congrats you "toastie postie!"  Truly do hope to FINALLY get to meet you in Oct. I know you've tossed it around. Please see the thread in the 'AN Community" forum.

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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: One month post CK treatments
« Reply #2 on: August 20, 2009, 08:34:43 am »
Yet prior to sharing this, I read others' post-radiation experiences on this ANA site to inform me symptoms in some months or years out should not be unexpected. Now that's a bummer!!

You will probably have one bout sneak up on you in the next 6 months or so. It is a bummer, but although it doesn't seem like it at the time, it goes by pretty quick. Before you know it you will be on the other side, and your AN and treatment will both be history.

Good news on the first check up. The key words are "the tumor's size is in check." That is the main thing, so let's keep it that way!

Welcome to postie status. :)

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.