ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: windy on August 05, 2010, 10:45:36 am

Title: Two Year Anniversary GK - Need Input!
Post by: windy on August 05, 2010, 10:45:36 am

Hi All,

I have not posted in quite some time, but could really use some input from those with knowledge or personal experience.  I just had my two year MRI that related to my Aug. 2008 GK treatment.  My neurosurgeon (not the doctor who actually did the treatment) told me that the tumor had grown between 1 and 2 mm, approximately 1.8 mm's, to be exact.  He said it measured 12.8 mm's.  My history of the last anniversary MRI in Aug. 2009 showed a "possible, but not completely sure" amount of shrinkage with a very tiny amount of necrosis.  I lost 50% of hearing recognition suddenly in Dec. 2009.  They ran another MRI at that time and it seemed to be the same size as Aug. 2009.  The neurosurgeon said that my tumor's growth was not considered "common", but he has seen it happen.  He wants to run the MRI again in four months.

I am very disheartened.  Should I be extremely concerned?  I feel especially disturbed because I was told I was not a good candidate for surgery due to autoimmune problems.  The neurosurgeon also told me it would be way too early for another GK treatment and they do not have enough data on a second GK treatment and a possible cancerous outcome.

Thank you for any input you can provide!  I am really feeling anxious and pretty down about the news.

 

Title: Re: Two Year Anniversary GK - Need Input!
Post by: nanramone on August 05, 2010, 12:12:12 pm

Hi Windy - I suggest you send the MRI to Pittsburgh and have them give you advice. Did you go to the University of Pittsburgh? They have been very helpful to me post GK, and Dr. Lunsford asked to have my followup MRIs sent to him.

good luck.

Nancy

Title: Re: Two Year Anniversary GK - Need Input!
Post by: windy on August 05, 2010, 08:19:55 pm

Thanks Nancy for your suggestion.  I did e-mail Dr. Lunsford and will wait to hear back from him.  My neurosurgeon in my area does GK himself and is head of neurosurgery, so he is fairly familiar with GK.  I hope to hear back some positive news!

Title: Re: Two Year Anniversary GK - Need Input!
Post by: Lizard on August 05, 2010, 09:11:44 pm

I agree Lundsford and the whole team at Pitt are very gracious.  Hopefully they can help.
Liz

Title: Re: Two Year Anniversary GK - Need Input!
Post by: mk on August 06, 2010, 11:40:44 am

Hi Windy  ;)

take a look at the other thread running today with title "was told that FSR treatment had failed" by clarmst. It is not unusual for ANs to show some growth first before stabilizing.

Marianna

Title: Re: Two Year Anniversary GK - Need Input!
Post by: windy on August 06, 2010, 04:49:40 pm

Thanks for the input.  I will look at the thread.  All information that I can gather is helpful!