Author Topic: 18 month post-GK update  (Read 3817 times)

mk

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18 month post-GK update
« on: October 21, 2009, 07:58:47 pm »
Hello everyone,

I have now completed my consultations with radiation oncologist and ENT and I am happy to report that at 18 months post-GK everything is stable. The AN remains unchanged. No shrinkage, but no growth either. The darkening that we saw at 6 and 12 months is beginning to disappear. The radiation oncologist said that this may be an indication that "things are settling down", whatever that means. He said that we should stick with the 6 month MRI schedule for now.

The hearing test was exactly the same as the one that I had right after GK. That is, some hearing loss (30-40 PTA) in the lower frequencies, and normal at the higher frequencies, as well as perfect word recognition. ENT was optimistic that since there is no change in so many months, there is a big likelihood that "it may stay like this for years".

I still have the numbness, accompanied by dry eye, which I know that will likely be there for ever, but I consider this a very minor problem. I haven't had any new symptoms and my energy levels are higher than they have been in more than a decade. I feel very fortunate and grateful, that up to now things have worked so well.

 I also think that my doctors did a terrific job, given that my situation was quite challenging because of the size. They obviously devised a very good treatment plan and I am very thankful to them as well.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

ppearl214

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Re: 18 month post-GK update
« Reply #1 on: October 22, 2009, 05:29:45 am »
Marianna,

a MAJOR congrats to you for this update! Well done! :)  Love hearing these kinds of results and you know I send wellness wishes your way.  Truly.... thrilled to hear this.   I know some issues still persist but overall, with the growth not doing anything and "settling down", great news!  Stable...   dying... I love it! :)

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

GM

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Re: 18 month post-GK update
« Reply #2 on: October 22, 2009, 04:14:42 pm »
Great news!!!  Time to relax and celebrate!
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Jim Scott

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Re: 18 month post-GK update
« Reply #3 on: October 22, 2009, 04:22:39 pm »
Marianna ~

Wow, what a great MRI report!  Congratulations on such an excellent GK outcome.  May things only get better as the tumor continues it's slow-but-sure death.

Jim
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.

Keeping Up

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Re: 18 month post-GK update
« Reply #4 on: October 22, 2009, 08:13:44 pm »
Yeah MK

You have had awesome results.  You are my GK poster girl so keep it going.  You never know, just might follow in your footsteps.

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

sgerrard

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Re: 18 month post-GK update
« Reply #5 on: October 22, 2009, 08:19:49 pm »
Hi Marianna,

Yeah, yeah, another great MRI/hearing test result, what else is new?  ;D

I would like to take this opportunity to thank you for your many thoughtful and sensible replies this year, particularly to questions on swelling and trigeminal nerve effects. They are a big help, I hope you can keep them up.

But take a few days off to celebrate first.  ;)

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.

Joey

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Re: 18 month post-GK update
« Reply #6 on: October 23, 2009, 08:34:41 am »
Hey Marianna - Just wanted to congratulate you on the great report!  That's awesome, and I specially liked hearing about your increased energy levels, which must help in keeping up with your little ones on the homefront.

I'm just past the one year mark, now.  I go see the neuro Monday and fingers and everything else crossed.  It's been a little bumpy on my road but doing ok overall.  I'll report in later.

Take care and keep up the good work.  You are an inspiration here and I learn from your posts.

Regards, Joey
Left sided AN.  GK over and done with at Mayo Clinic on
10-2-08; according to Dr. Link, AN measured 15 mm in greatest posterior fossa diameter; used 11 isocenters of radiation to cover tumor volume of 2.3 cm3.  Follow up on 4-14-09 indicated necrosis, no change in tumor size and less hearing, darn

mk

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Re: 18 month post-GK update
« Reply #7 on: October 24, 2009, 05:03:20 pm »
Thank you guys you are so sweet.

Joey, it is good to hear from you. How have you been? I hope your visit to the neuro goes well - I am looking forward to your report.
You are right about the little ones, they are as busy as ever. Same with work, things are crazy. I am grateful that I have the energy to cope with all this.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

yardtick

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Re: 18 month post-GK update
« Reply #8 on: October 24, 2009, 06:50:03 pm »
Good news Marianna  :-*

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Agate

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Re: 18 month post-GK update
« Reply #9 on: October 27, 2009, 08:53:11 am »
That's good news!  I'm only a week out now - your posts have always been like a safe port in a storm. 

Vivian B.

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Re: 18 month post-GK update
« Reply #10 on: October 27, 2009, 04:32:38 pm »
Hi Marianna,

Sorry for the late reply. It seems I am not up to date these days. It is such great news to hear of your good results. As you know I will be treated in the same place. This brings me great comfort. Keep up the wellness.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.