Cyberknife info needed for newbies.....

[aardvark]

Steve -

When I first wrote to Dr. Chang 2 years ago to ask if he thought I qualified for CK, he replied within 24 hours - on a weekend.   Though I had already made up my mind to go to Stanford, his accessibility was the frosting on the cake.

It was nice to read that he hasn't changed his MO.

[P. Palmer]

I am a 70 year old newbie, diagnosed 2-6-07 with a1cm AN. My six month MRI shows growth to 1.6cm. At my age this should not have happened. I am going to Emory for radiation soon, too old for surgery. Thanks for listening to me.
P Palmer

[marystro]

That's the way how all my Stanford team works - very email accessible.  Never had a medical team that would do that in my life!!  They are still responding to my emails within 24 hours typically!

Mary

[goinbatty]

I've had very prompt email responses from the radiation oncologist at CK in Jacksonville, FL.  This center opened in 12/06, and has done 4 ANs.  However, this physician completed her residency at Stanford.  I hope to travel to FL for consults soon.  Will post an update afterward. 

[Mark]

It is not uncommon for a lot of the new CK centers to have a "Stanford connection", either docs who have rotated through as part of their basic training or those who actually were part of the CK treatment planning team there. I don't have any specific knowledge, but am aware of 5-6 centers where that exists. While CK is certainly becoming much more available in the last few years ( there were around 10-12 nationally when I was treated in 2001 and I recently heard the number is closer to 70 today), evaluating the team experience of a center should also factor in use of other machines. For example, Many teams have  years of time with GK or other machines before the CK. Total number of AN's they treated by radiosurgery is more meaningful than the number using CK alone.

Mark

[goinbatty]

Thanks for the info.  I'll keep that in mind.  Evidently their radiation oncology practice works with the GK center in Jacksonville as well as the CK.  I've already consulted locally regarding GK but am leaning more toward CK.  Last I heard, the CK center in SC won't open until possibly 12/07. 

[ppearl214]

Hi P....

welcome!  I didn't want you think that this was missed. It's good to see you here.  You are in great hands at Emory (former Atlanta-ite here! Family still there) and we are all here for you.

Good to see you here... and again, welcome!

Another "P"

(Phyl)

I am a 70 year old newbie, diagnosed 2-6-07 with a1cm AN. My six month MRI shows growth to 1.6cm. At my age this should not have happened. I am going to Emory for radiation soon, too old for surgery. Thanks for listening to me.
P Palmer

[sgerrard]

P. Palmer, you snuck in under the radar, but watchful Phyl noticed. Not much gets past her. I guess you might think an AN would not grow at 70, but at this point, nothing much about ANs surprises me, they seem capable of all sorts of mischief. I am headed for radiation myself in September, radiation is doing well these days and is a good choice for many.
Best wishes, Steve

[ppearl214]

P. Palmer, you snuck in under the radar, but watchful Phyl noticed. Not much gets past her. I guess you might think an AN would not grow at 70, but at this point, nothing much about ANs surprises me, they seem capable of all sorts of mischief. I am headed for radiation myself in September, radiation is doing well these days and is a good choice for many.
Best wishes, Steve

I watch the radar carefully...
Phyl

[P. Palmer]

Sorry I snuck under the wire but computers are sometimes difficult for older people. I tried to correspond correct but you have made it most difficult for this mind.
I am going to Emory for the special MRI on 9-4-07 and R. Surgery at 6:15 on 9-6-07 with Dr. Jeffery Olson, Neurosurgeon and Dr. Ian Crocker, Radio oncologist. I have great faith in both of them and feel I am doing the best I can for  my age.
Forgive me for not responding correctly. I enjoy all your opinions and comments.
Phoebe Palmers

[P. Palmer]

I need to make a correction. The procudure is sterotactic radiosurgery, one time. It is ok to get older if you can admit you are not perfect. Is anyone with an AN perfect?
Phoebe Palmer not with and s

[sgerrard]

Phoebe,

You posted just fine. Sneaking in is no problem, everyone does that. If you want to start your own topic, just pick Radiation/Radiosurgery, then click the New Topic button (its on the far right side). But posting here will work too, and no apologies are needed. No one with an AN is perfect - and for that matter, no one else is either.

My radiation treatment starts the week after yours. It makes me a little nervous, but I have faith too, and that is the most important thing. It will work out well in the end.

Steve

[bpham]

This is a great thread for CK information.

I'm trying to see if CK is a better option than surgery for me.  I have few questions that someone may be able to answer.

1.  In regard to long term status, do we know of someone who had CK at the earliest time when CK was just introduced and their current statuses?
2.  Currently my symptoms include:  some loss of balance, facial switchings, tinnitus and loss of lots of hearing on the left ear.  With CK, will these symptoms go away and how long will that happen?  I think I'm willing to accept the loss of hearing but the facial numbness and twitching are hard to take.

I'll be talking to Dr. Chang soon but would like to find out from yourself since you've experienced them yourselves.

Thanks very much.

[bpham]

May be this is not the forum to ask, but since there are so many here that had CK, I have to ask.

1.  I saw mentioning of future options if the first CK did not work.  Do we know if the procedure (CK, Microsurgery, etc...) would be more difficutl the second time around?  Are these verifiable facts?
2.  If my AN is currently bothering my facial or sensor nerves and some loss of balance, after the CK treatments, will these effects be worsened?

Thanks.

[aardvark]

Hi, bpham -

At the time of my diagnosis I had balance problems, and some difficulty filtering sounds in my AN ear.  Tinnitus was becoming more noticeable (I have it in both ears) and memory was declining.  I had no facial tics or numbness, and no eye issues.

I'm now almost 2 years post-CK, still with the same symptoms, but with better coping mechanisms.  I know now that stress makes my tinnitus much worse, and that fatigue really affects my balance, so I try to be aware of potential stressors before they blindside me. 

I chose CK in order to stop the growth of my tumor before my symptoms grew worse, figuring that I could deal with the status quo indefinitely, if that was to be the result.  I didn't expect my symptoms to improve, and they haven't.   But that's okay - I achieved what I set out to do.

You're asking really good questions.  I'm confident that Dr. Chang will be able to answer them for you.  (I freely admit to being prejudiced, lol) 

Wishing you all the best with your research -
aa