LOOKING FOR LONG TERM RADIATION PATIENTS

[Patti UT]

Hi All, 
   As I mull over the endless supply of conflicting information about treatment options, one thing I have noticed is that most patients are 1 mo, 3 mo,  6 mo, 1 year, 2-3 yrs out.  I realize CK is newer, and Novalis pretty new, but GK has been around a while.

I would love to se some stories from patients who had radiation treatment for their AN's  5-10 years ago or even longer.  I'm interested in long term effects of the treatment.  Once the tumor cells die, does one get MRI's for life, or at some point is it decided It's not coming back and you can finally forget about it.

Are there any studies about the effects of having a dead peice of tissue sitting in ones head for the rest of ones life?

Any input would be helpful

patti ut

[ppearl214]

Patty

I am 3-1/2 yrs out, but if you want longer timeframe... for CK.. that is Mark (profile name here.. Mark ). I believe he is approx 8 yrs out from his CK at Stanford. If you send him a PM, he's good about responding.

Phyl

[Patti UT]

Here's a question I forgot to ask the doc at consult yesterday.  Once the tumor dies off,  what is the long term effect of having a dead peice of tissue sitting in ones head the rest of your life?  I invision something  rotting    EWWWWWWW!!!!

[ppearl214]

I invision something  rotting    EWWWWWWW!!!!

I try not to think about it 

xo

[Vivian B.]

Hi Patti

Great question. I would love to see others reply that have been more than 2 or 3 years post radiation as I have been wondering myself. I know that there are studies over a 10 year period for gammaknife and the success rate is supposedly 95% to 98%.
I think no matter what, it would always be safer to have an MRI even after you have been cleared every two years or so just to make sure.

Vivian

[sgerrard]

Here is a link to Mark's last post about himself - 7 years, all good:
http://anausa.org/forum/index.php?topic=8190.msg88116#msg88116

I'm pretty sure the AN turns into scar tissue. I'm pretty sure it doesn't rot. 

Steve

[Patti UT]

I'm pretty sure the AN turns into scar tissue. I'm pretty sure it doesn't rot. 

THAT'S GOOD, I WOULDN'T WANT TO HAVE TO CALL ALL YOU RADIATION PATIENTS "ROTTEN HEADS"

thanks for the link Steve, I think I'll pm mark

patti

(Patti, fixed the quote only! Phyl)

[ppearl214]

scar tissue is the same understanding I have... and please keep in mind that CK has been around for approx 15 yrs vs GK which has been around for approx 40.  Thus, the difference in those long term vs. shorter term.  Regardless of being around longer or shorter, keep in mind the overall success rates for each (by %)

Phyl

[mk]

GM (Gary) is another long term radiation patient. He had GK in 2003 and he has been doing very well.

Marianna

[Patti UT]

Got word from the radiation doc I consulted with that the tumor, although it is NOT scar tissue, acts much like scar tissue does once it is dead.  Guess that means it just sits there and does nothing.............hopefully

patti ut

[GM]

Hey there!  

I actually go back for my follow up & hearing test on Monday.  I had my GK in 2003, from what I can read ( pretty sad how we read our own MRI's huh?), it looks unchanged (but I'm not the doc).  I'll feel better after I have my hearing test and see how my hearing is.

Overall I feel great.  I live my life pretty normally (what ever that is )  I'll let you know how my MRI works out.

Gary  (aka GM)

[ppearl214]

Hey there!  

I actually go back for my follow up & hearing test on Monday.  I had my GK in 2003, from what I can read ( pretty sad how we read our own MRI's huh?), it looks unchanged (but I'm not the doc).  I'll feel better after I have my hearing test and see how my hearing is.

Overall I feel great.  I live my life pretty normally (what ever that is )  I'll let you know how my MRI works out.

Gary  (aka GM)

Gary, just wanted to say good luck Monday... and knowing how well you are versed reading your MRI's....... and hearing things are going well... continued wellness wishes your way!
Phyl

[carter]

in August, Dr Medely made a comment when someone wrote about the tumor beign left to "rot" ..... he advised the use of prefume in the AN ear ....  this is from the Cyberknife support forum.

he went on to say that the majority of the tumor is not living material when it is treated .... 

[ppearl214]

in August, Dr Medely made a comment when someone wrote about the tumor beign left to "rot" ..... he advised the use of prefume in the AN ear ....  this is from the Cyberknife support forum.

he went on to say that the majority of the tumor is not living material when it is treated .... 

hey Carter.

Dr. Medbery was joking around in his usual fashion by noting perfume in the ear. I've met the man and he's got a terrific sense of humor. Let's hope that no one took his comment seriously as we don't want anyone walking around with Chanel No. 5 in the ear (maybe behind the ear, yes... but not in the ear..  )


he also meant the that tumor, after treatment, is what becomes non-living (goal of the radiation to kill the core cells of the growth).  That is what all of us hope when we endure radio-treatments.. that the stinker dies its death.

Thanks for sharing this with us!
Phyl

[GM]

Thanks Phyl for the kind thoughts and wishes...all of us I'm sure get stressed during these tumor "checks"

Tumor rot??  LOL…   at least my heads airtight (well I think it is)   

I just wanted to drop a quick update on my MRI results.  I normally don’t post the actual tumor measurements because I found that they seem to “hunt” from Radiologist to Radiologist…depending on who is reading the report.  The MRI reading showed that the tumor has not significantly changed in appearance to the prior examination.

No significant change in audiogram. Speech Reception/Aware Threshold:  Right Air 10dB, Left Air 65 dB.  Word Recognition: Right 100% at 50dB, Left 80% at 80 dB.

I’m still waiting for University of Virginia’s take as they are still monitoring me as well