Positive CyberKnife Stories Only

[Nancy Drew]

I need some positive stories here.  Did any of you maintain your pre-AN hearing after Cyberknife Surgery?  I have mild hearing loss, and I am hoping my hearing will not get worse if I have CK.  Thanks.  Nancy

[sgerrard]

You might want to take a look at this fairly recent topic, titled "Has anyone retained their hearing after Cyberknife or Gamma Knife treatment?"
http://anausa.org/forum/index.php?topic=6227.0

My hearing is essentially the same as at the time of diagnosis, with a little more decline in the low end.

Steve

[Mark]

Unchanged hearing 7 years out from CK treatment


Mark

[ppearl214]

Nancy,

I believe you know how my CK turned out, but quick refresher. (sig line below also tells the story)

1cm left AN
5 days/dose CK, total 30Gy just over 2 yrs ago.
As of Feb 2008, hearing test confirms my hearing is 100% of what it was at time of CK (I have approx 80-85% hearing with over 92% voice recognition) as well as MRI films show slight shrinkage in AN size.... dr's are 85% confirmed its dead (never truly knows unless we see enhanced growth or I let them cut to get it out).


Hope that helps.
Phyl

[Lorenzo]

Nancy,

Ok, depends on one's definition of positive, I guess. In my case, my story is very positive, for me. But if hearing preservation at pre-treatment levels is the criteria, then I don't come into that category. Lost a little bit. Still makes my CK experience a very positive one. Hope this makes sense. I would say if you have mild hearing loss, and you might lose some more, you'll still have a good hearing level. I have none on my AN, either before or after.

Ciao, Lorenzo

[Nancy Drew]

It is good to hear the positive stories.  From what I am concluding, a lot of positive GK and CK results come from doctors and facilities that are well established.  I am sure it is also just luck of the draw in cases of all types of treatment whatever they may be.  In researching on the internet it seems that all of the treatments available for treating ANs can advocate for their way and discount the other types of treatments.  I think this is what is making me so confused.  My doctor, who does surgery and GK, has given me info on GK (he doesn't think I am a canidate for surgery) that just seems so positive mainly because there is more long term research to go on than CK.  But, then I turn around and think that maybe CK will one day down the road have enough long term research that I would go "darn, wish I would have done CK instead".  Steve and all of the rest of you who did CK, did you go to doctors who only do CK and doctors as well who do only GK.  If you did go to both, how did you make your decision?  I am sure all of you did the research, but in the end did it come down to what the doctor said.  Are there doctors out there who do both GK and CK?  Did a doctor do a better sales job that made you go with CK instead of GK?  Sometimes I think I am trying to make GK work because it is easily available, I like the doctor, and I guess I just don't want to have one more treatment option to confuse me.  I am all mixed up.  Nancy

[ppearl214]

Nancy

to help answer your question... and I believe this to one of the many reasons for CK... by "fractionating" a radio-treatment, it  is suppose to help with hearing preservation. As you saw in my earlier post, I have much of my hearing. My goal was to try to save as much as I could. There are stats that show that by fractionating radio-treatment, there is suppose to be a higher % of hearing preservation (as you already noted, "individual results may vary"....).  My understanding in speaking to many (MaryBKAZ and others), that for those that choose 1 dose radio-treatment, they tend to have a lower % of serviceable hearing, thus, they choose 1 dose (regardless if GK or single dose CK, as in MaryBKAZ's case).  For me, I choose fractionated CK due to the higher % of hearing preservation noted in order to try to save mine.  In my case, I have been lucky and they did, indeed, save mine.  As you can see, I was treated in Boston. I am very fortunate to have a wonderful medical community here, thus, where I chose was for me, a non-issue.  I believe BI has the CK and FSR. I know other facilities locally that offer GK (Dr. Noren in Providence, RI... only a 45 min car ride away) as well as Tufts University.... Brigham/Woman's offers Novalis and has a purchase requisiton for a CK.  I know Mass General Hosp offers FSR and Proton..... all viable treatment options for AN's.

Hoping others will chime in to elaborate.

BTW, in your GK Stories Only thread, you question if Mark was pre-treatment, etc.  (Mark, just trying to help!).... Mark is over 7 yrs post-Cyberknife.  Mark is one of only a few that I know that are this far down the road post CK treatment. 

Hope this helps.
Phyl

[Lorenzo]

Yikes, that is a difficult place to be in, confusion! Know it well, we all do.

In my case it was simple. I was offered surgery or surgery or nothing, and I didn't like the attitude of my doctors here, at all. So I started looking around to other countries. Found GK, then found CK. Discovered Stanford had been invented CK and had been using it for a long time with excellent results, were the most experienced and I got very good responses to my questions. (Others didn't reply so frankly and openly) AND, the best thing for me was that Dr Chang also does surgery for ANs, so that gave me confidence. Why I chose one over the other? Well, I felt a lot more comfortable with the notion of NOT having some sharp metal tools in my head. Regardless who was using them! Don't get me wrong, if somebody had told me that surgery was the way for me for whatever reason, then I would have gone that route, no problem. Plus, the results quoted that I read about in various places regarding CK were impressive, so in my simple way of looking at things, I found my way. I FELT COMFORTABLE with that choice, so i went for it. I had to feel right about it, I'll have to live the rest of my life with that choice. GK never appealed to me, just because of the less flexible and stronger hit of radiation, put into my simplistic terms!

Hope this helps. Good luck in making the choice that feels right for you.

Ciao, Lorenzo

[Nancy Drew]

Phyl,  I read the GK post first, and I don't think Mark had a sig so didn't know if he had had treatment or not.  Then I saw on this post that he did indeed have CK.  Glad to hear that he has had such good success.  If I understand correctly Phyl and Lorenzo, and please correct me if I am wrong, it sounds like you didn't consult with a GK doctor at all.  I am so worried that my doctor is stuck on GK that he has sold me.  He is supposed to be good, and I'm buying it.  I guess in the end you just have to figure out how far you are willing to go to get to your decision.  Hopefully the second opinion next Monday will give me some more clues, but I know this doc also does GK and not CK so I will probably get a biased answer there also.  I just need to take a deep breath and know that I am in no hurry at this point.  Thanks for sharing your stories each and every one of you.  No matter what treatment all of us chose, the most important thing is to remember that we are in this boat together and supporting each other.  Nancy

[ppearl214]

Nancy,

I couldn't agree with your last statement any better! 

I did consult GK... to make a VERY long story short, upon initial diagnosis, I was referred to Dr. Peter Black's office at Brigham/Woman's (he still remains my NS and is following my Chiari).  In meeting with his "protege", Dr. Elizabeth Claus, she did her internship in GK while at Yale University. I quizzed her every which way about GK... and asked her about CK. Like you, first she told me that  she didn't want to "cut" and to go get it "zapped".  Now, B/W offers Novalis. As a courtesy to her, I met with their Novalis team... although an impressive team doing great work in breast cancer, I didn't feel (nor did Dr. Claus) feel it was for me and my situation. I met with the CK team at Beth Israel... and I quizzed them every which way (trust me, they still duck for cover when I show up for follow ups!). I quizzed Dr. Claus about the GK.  Ultimately, I made my own decision based on my homework.

funny, when I see Dr. Claus now... even over 2 yrs post CK... she is showing how impressed she is with my CK treatment... and .... I got a small birdie at B/W that they have a purchase req for CK now. BI has the first in New England... B/W will have the 2nd.

Hope that helps.
Phyl

[Nancy Drew]

You are a smart cookie Phyl to ask and quiz and ask and quiz and get to a point where you felt like CK was for you no matter what the talk was from other doctors.  Not to go into detail, but I had another medical problem that I researched like crazy and couldn't find hardly any positive info on the internet to guide me.  My doctor told me that this procedure he wanted to do would cure my problem.  He had only done it on four other people with my same exact symptoms, and every case was successful.  I went to a couple of other doctors who said what he wanted to do was just crazy, and they told me not to do it, but then they couldn't come up with an idea of what I should do instead even when I asked.  I was so desperate that I went with my doctor's "crazy cure" anyway, and he was right.  I was his 5th success story.  Bless his heart.  You just have to go with your gut I guess even when you are getting all of these opinions.  And, you have to know that whatever you do there is a chance that it might not work out.  One of those doctors I went to who said "no" to the "crazy cure" was giving me a consultation for a different problem (for which he got right, by the way) couldn't believe my doctor's "crazy cure" worked.  He just kind of ignored it and went on with the other problem at hand.  I give them both praise.  Doctors are human, and I think they can only do so much.  There is a lot of research for them to wade though also.  Nancy

[sgerrard]

Doctors are human, and I think they can only do so much.  There is a lot of research for them to wade though also.

Very true, and often forgotten. Unlike us, they are not typically obsessed with ANs, either.

I want to add a few quick comments on GK vs CK.

I consider the clinical results of GK to apply to CK, especially regarding control of growth. Although it is different machine, the principle of applying focused radiation to a tumor is the same. Dividing the dose over 3-5 days does not change the fact that a week after treatment, both CK and GK patients are in the same boat, with an AN that has been blasted with some radiation.

I consulted with a radiation oncologist at the Gammaknife Center here in Portland, before contacting Dr. Chang at Stanford about CK. If the CK deal had not worked out for some reason, I would have been content to get GK; I was just happier to get CK instead. Like Lorenzo and others, I was impressed by Dr. Chang's willingness to communicate about the treatment by email - on weekends, in some cases.

Dr. Medbery often says on the CK forum that they have both GK and CK, and usually use CK on ANs. If there is no hearing to preserve, then it is a toss up; either one will control the tumor well. There are not many places that have both machines, they are a little spendy for that. The trend over time will probably be to CK, because it can treat a wider range of other tumors as well.

Steve

[Tumbleweed]

FWIW, Nancy Drew, I am in total agreement with both Steve and Lorenzo and chose CK for the same reasons they cited. Many of your posts, Nancy, seem focused on finding the best way to preserve your hearing. I totally share your concern. It is a primary concern of mine, and one which ultimately led me to decide that CK was best for me. So please don't cut yourself short. Take the time to make the decision that is right for you, and don't let any doctor or anyone else pressure you into making a decision one way or the other and sooner than you wish. The decision you make might have lifelong effect on your hearing, so if that's important to you, do yourself a big favor and research the heck out of it until you come to the place where you are certain what you want to do. That day will come, rest assured.

One other point, once you decide on the best type of treatment for you personally, I would advise that you find the doctor who is the MOST EXPERIENCED giving that type of treatment. This is what led me to Dr. Chang. He has done hundreds of CK treatments. Most doctors can only cite having done several a year. If I remember correctly, Dr. Chang did about 125 CK treatments on ANs in 2007 alone! No matter what the profession is, practice makes perfect. On top of that, I get the feeling that Dr. Chang is totally dedicated to his patients. I emailed him for the first time on New Year's Eve and got a reply from him within 2 hours. On New Years Eve! How many doctors would do that?

My two cents... 

Best wishes,
Tumbleweed

[Nancy Drew]

I am liking this Dr. Chang.  He is everywhere on this forum so he must be the best.  I think my biggest fear is that I'll get all hyped up about getting CK, and then I will have an insurance problem.  I have fairly decent insurance as long as you do what they want you to do.  I just made an appeal for a simple medication matter (which would have been in both of our favor), and they took weeks before giving me an answer that wasn't really an answer at all.  It was stupid. Long story that I won't bore you with.  Someone sent me a copy of their appeal letter to an insurance company so he could get CK at Stanford.  Seems like he had to go through a lot to get his way because his facility had just gotten a new GK, and they did not have a CK in network.  Maybe it is stupid to think about the whole insurance thing before I have even tried.  But, I still have a lot of talking to do with my doctor.  I am going for the second opinion next Monday, and I will be armed with lots of questions for him and one to take back to my AN doctor as well.  So, I am just kind of riding the wave for now.  I guess it will come together eventually.  Thanks for everyone's input.  Nancy

[Lorenzo]

Nancy, just in case you didn't see it, the latest issue of the ANA newsletter I received has an article about GK vs Ck and hearing preservation. Not sure if it's online, but maybe there's a link to it on the main ANA home page. CK comes out better.

Dr Chang is incredible in the way he responds and looks after his patiennts! I had a running e-mail exchange with him when I was investigating the whole CK possibility, and even with the 8 hours time difference, I still got answers very quickly! I wonder does he ever stop!!! Oh he's dedicated alright!  I am sure so are others, but for me, seen that I had the choice of going where I wanted (no insurance would cover me anyway) I might as well go to the ones that had the most experience.

About experience. Somebody (and I can't remember who) told me once that experience, when it comes to rads, is important but not as vital as it is with surgery. Still, I felt more comfortable with my team. Of all the one's I looked into they impressed me!

and hey, I got a holiday in CA along with treatment, and excuses to go back there on a regular basis!!! How good is that! 

Ciao, Lorenzo