ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Patti UT on August 05, 2009, 01:42:16 pm
-
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
-
Patty
I am 3-1/2 yrs out, but if you want longer timeframe... for CK.. that is Mark (profile name here.. Mark :D ). 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
-
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!!!!
-
I invision something rotting EWWWWWWW!!!!
I try not to think about it ::)
xo
-
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
-
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. ;D
Steve
-
I'm pretty sure the AN turns into scar tissue. I'm pretty sure it doesn't rot. ;D
THAT'S GOOD, I WOULDN'T WANT TO HAVE TO CALL ALL YOU RADIATION PATIENTS "ROTTEN HEADS" :D
thanks for the link Steve, I think I'll pm mark
patti
(Patti, fixed the quote only! :D Phyl)
-
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
-
GM (Gary) is another long term radiation patient. He had GK in 2003 and he has been doing very well.
Marianna
-
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
-
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)
-
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
-
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 ....
-
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
-
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) :D
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
-
Gary... sounds like you are doing FAB and keeping those wellness wishes coming your way! You've come a longgggggggggg way, bebe! :)
Phyl
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) :D
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
-
Patti...I'm one of those "10 year post-op people".
No issues here...check out my latest updates.
http://anausa.org/forum/index.php?topic=186.0
-
RamAir,
Your story is purely inspirational. Thank you for sharing. It came a good time as I was reading an article this week about gammanknife and risk factors years from now and was a little bit freaked out, but after reading your story, you make a lot of sense in choosing radiation treatment. Thanks again.
Vivian
-
Patti...I'm one of those "10 year post-op people".
No issues here...check out my latest updates.
http://anausa.org/forum/index.php?topic=186.0
Thanks RamAir,
Great story, I am so happy to read it. I am still in the deciding mode. having terrible balance issues I'm not sure the radiation will hlep, might hinder. The fist surgery left behind some of the vestibular that is causing havik, surgical removal I'm told can get rid of it. My personal jury is still out. especially after reading your story.
patti ut
-
I heard my name mentioned and thought I'd drop in :)
I'm scheduled for my 8 year MRI / audiogram in November with Dr. Chang. No changes from the last update which Steve posted earlier in the thread
Mark
-
Hey Patti UT,
Just this past Thursday my wife and I met with the nerolotologist and he said the AN after LINAC STR would be scar tissue. I asked because of fear that if the tumor returned or the radiation didn't work could the tumor be excised. He said after all of the people he has treated they had only one which returned and were going to operate soon.
Safety & blue skies,
DJ
-
Hi Patti,
Just thought I would chime in and see how you are doing. I enjoyed our conversation a few weeks ago. Have you gone for a consult with Dr. Reilly at Cyberknife? Please let me know how you are doing. I have been thinking alot about you lately.
Sher
-
HI SHer,
met with SLC CK, Huntsman who does GK & Novalis, my orig surgeon and phone consult with HEI. took another bad fall, 2 more bad injuries. Suregry is my best bet for Improved balance, so as much as I wanted to convince myself to go radiation, I need to go after the hope of not falling all the time. I'd like to get another 30+ years out of this body, I need to quit breaking it. :o)
Can you do lunch next week? Lets get Andrea and Jeff and get together.
Patti ut
-
Patti,
I am so sorry to hear of your balance problems. Of course you would want to do whatever it takes to keep from falling. I still have that fear at times.
Would love to have lunch next week, just let me know and I will see if I can get off work.
Hang in,
Sherry
-
Hi,
I had FSR at Johns Hopkins 9 years ago. I just had my 2- year MRI checkup. There has been no change in all this time. I have 90% deafness and a little eye blinking and smiling problems, but not too bad. The tumor is 2.5 cm and is just dead, I guess. It isn't rotten or anything. Nothing much has changed. I still drool sometimes and have trouble with eating and drinking, but as long as I stay away from soup and use a straw to drink, it isn't too bad. I feel lucky to be alive and have since become a nurse. It definately gives one character. Oh, and people think I'm pretty. Go figure. So, I'm glad I didn't choose to have the 18 hour surgery with all the scary risks. I would, and have, encouraged others to go this route. I find the weather, stress, and being tired affect the stiffnes in my face. My neurologist gave me lose dose valium to relax the muscles. We'll see how that goes. I'm a big believer in accupuncture but it's $90 a session here so I guess I can't do that. Feel free to write me. I'd love it!
-
I stay away from soup and use a straw to drink
I remember the first time I ordered a beer at a bar shortly after my surgery .... I quickly realized I could not drink it without getting half of it on my shirt.... so I asked the barkeep for a straw.... I bet I was his first person to drink a Guinness with a straw :D
-
joef,
That's funny about the Guiness beer. No, I don't think you're the first. I have had Dos Equis with a straw- the waiter knows to give me one. Also, wine-merlot stains really badly so I have learned through many ruined clothes. I think we are doing well to have a sense of humor about this. :)