CK at Stanford - done and done

[crivers]

I thought I would share my recent treatment for my AN at Stanford. I have some earlier posts in the Watch and Wait section, but I'm not allowed to do that anymore, since I am now a postie.

Quick background (full posts on wait and watch):
AN identified June last year here in Australia. They have very limited technology options outside of surgery here and my neurosurgeon recommended watch and wait (and then eventually surgery). I waited for 6 months and in Feb this year I had a 2nd MRI and hearing test. The MRI showed tumor growth and the hearing test suggested further loss of hearing from 6 months prior. I got a bit concerned and decided to seek additional opinions from the US.

Plan of attack:
I arranged a trip to Stanford to visit with Dr. Chang and his team to understand their opinion, recommendation and options. This was meant to be a consultation only. The idea was to gain comfort with them, so that when the time came, I would know exactly what I was going to do and where I was going to go. Getting the appointment set up was a breeze - after a simple email request to Dr. Chang - he put me in contact with 2 members of his team to do all the scheduling, insurance details, etc. They even worked to accommodate my travel schedule since I was flying across the world to see them.

What happened next:
My family and I met with Dr's Chang and Soltys for nearly 2 hours. They were very patient with us, as we had hundreds of questions and often prodded for additional details. I really appreciated the fact that Chang practices both surgery and Cyberknife. He spelled out my specific AN situation in details related to both options and why he would specifically go with CK in my case. Very logical, very articulate, very compelling arguments. Of course I was still expecting him to say "when the time is right, but it is only small and we should just watch it for another 6 months, etc. etc." Well, he didn't say that...

Why the decision to go now?
Both Dr. Chang and Soltys had the same compelling way to look at it. Basically, where I was that day was my baseline. My baseline included the following: useful hearing (around 60%), minor tinnitus, zero balance issue, zero dizziness or vertigo, zero facial issues, no headaches... Not a terrible baseline, considering the known issues that this little AN can cause. His (and his team's) goal was to keep me at 100% of my baseline...period. Of course the number one goal is to kill the tumor, but I think you get my point (I certainly got his). So, I could go back to AUS and wait another 6 months and take a picture of it and get another hearing test (recall, in the last 6 months, my hearing had already degraded). Both Dr's were not against me doing that and stated that they would take me in as a patient at what ever time I felt was right. However, should I develop any further symptoms during that time, I would now have a new baseline and basically, that would be my new 100%. While this may not be enough for some, this was plenty for me and my family (after a very brief discussion) to determine the right thing to do.

From decision to schedule:
I left the consultation on Tuesday around 3PM. I made my decision to go forward with CK on Thursday afternoon and sent an email to Dr. Chang's staff to inform them of my decision and offer some dates that would work, since I planned on being in the US for the next 2 weeks. I called on Friday morning around 10AM and the staff had already gotten me scheduled, cleared all necessary authorizations and details with my insurance and set everything up. It was going too smoothly - too easy (this is when I decided that all stars were lining up and this was definitely the right decision).

Treatment week:
Arrived Monday - 5 April - for CT, MRI and mask fitting - the worst part about the visit - no food or coffee prior to the appointment. NO COFFEE! OK, I got over it, but I will say that when you are used to 2 cups before 6AM and you don't get a single cup until 11AM, well...OK, did I mention I'm not bitter...
Anyway, it went very smoothly, the nurses shuffled me around the clinic quite easily for the scans and the CK staff got me through the mask fitting quite quickly. The best part was when they told me I got to keep the mask.

Tuesday - free day - sightseeing in SF

Wed - first day of treatment - I was a bit uneasy, and not sure why, I am typically not that type of guy. So I opted for an atavan along with my steroid. The 45 minute session went by in what seemed like 45 minutes. The atavan may have helped, but it sure made me high the rest of the day, so I didn't take any more of that while I was there. Afterward back to SF for some sightseeing and nice dinner.

Thurs - second treatment - I was not at all uneasy this time, and the 45 minute session went by in what seemed like about 30 minutes. Now, I am not a meditator, but I was definitely trying to zone out to stay relaxed and positive and to pass the time. I think it worked. Afterward - some shopping - you know, for those things you just can't seem to get in AUS. I will admit though, I had to stop the shopping after a few hours, I was beginning to feel tired and a bit out of it, so I retired back to the hotel.

Fri - last session - I was a pro by this point and if I hadn't made it clear before now, the treatment was really nothing more that coming in and trying to take a nap for 45 minutes - I have to admit, that once they put the mask on me, I never opened my eyes, so I never saw the robot in action, but I heard it, so I believe it was working. This session seemed to go by in about 10 minutes. I was quite proud of myself for getting good at napping on demand or at attempted meditation. And just like that, it was all over. We said our goodbyes to the staff (did I mention they were wonderful), they gave me my mask and sent us on our way.

It all started feeling a bit surreal as we were leaving, like it all could have been a dream. There was absolutely no drama, no hardships, no pain, nothing that left a lasting impression of "whew, I'm glad that is over". So we just left...

Treatment finished around noon on Friday. By 10PM I was on a plane from San Fran back to Perth via Sydney. And there you have it; a trip to Stanford for a consultation that turned into a return visit for CK treatment. Was it weird the way it unfolded? Yes. Am I happy I made the decision? Yes. Would I recommend it to others? Caveatted Yes - as I know and most on this forum know, this is a decision that one has to make individually. If you are contemplating treatment by CK, I recommend it, but I won't push you to do anything - that is your call.

Why did I write this? I'm not really sure...maybe so I wouldn't forget it...maybe to remind myself how easy it was...maybe to try and share a story for anyone that may be anxious about an upcoming CK (or other treatment)...if I could aid just one person, that would be enough...who knows, it may just aid me, and that too would be enough.

I will attempt to post updates on how I am going as a postie. Right now, I am optimistic and determined to return to form quickly, but will push only as hard as feels right.
More to come...
Cayce

[sunfish]

Congratulations fellow toasty posty!!  I'm just about a month out from my CK treatment now, and I couldn't tell they did it to me at all at this point.  Of course, I'll be waiting for the other shoe to drop for quite awhile . . . side effects appearing later, etc., etc.  It sounds to me like you did some good decision making, and saved yourself a trip later, and the possibility of furthe disability.

[Jim Scott]

Cayce ~

Congratulations on completing your CK treatments and thanks for a comprehensive, informative update. I'm sure many pre-CK AN patients will benefit from your account of your experience. 

I wish you a very successful future - and a 'dead' AN!

Jim

[patt]

Congratulations to you ---

       Your post was very informative to me.  I was diagnosed with a 2.7cm AN in March.  I have an appointment with a Radiation Oncologist on the 26th of the month.  I am very worried and confused about the whole thing.  I have been doing alot of reading on this site and there is alot of information.  Sometimes I think I am reading too much.    I understand that the treatment is painless.  My question is --- how are you feeling now and what types of side effects do you expect to have???
       If there are any of you out there that have had this procedure, please feel free to share with all of us your experiences.
       It is a big decision to make -- I know that only I can make it, but I want to make the right one.

             Thanks, Patt from Minnesota

[crivers]

Hey Patt,

6 days after the last treatment - I feel pretty good, I do have a heavy head and I get a bit tired after running around with my 6 year old for a couple of hours, but nothing a little horizontal position won't cure.

I am fortunate that I have the week off, so I'm not taxing my brain at all, but I could see how that would be a bit difficult for me. Concentration seems a bit hard. Although I probably should not have, I did lift weights briefly on Monday and today (Thursday). Not at all a full workout, but enough to remind me that I need to do it and I enjoy it.

I had tinnitus before, and I have it now - I would say overall that it is more annoying, but today has been the best day, so I think it must be going back to normal. My hearing has definitely worsened, but I expect that is a temporary set back and will get back to pre treatment levels soon.

What do I expect longer term? Well, I am hoping and focusing for the best, but I am prepared for the worst. These short term side effects (I've been told) are a very curious bunch. They may or may not happen, they may start within a month or may start within 6 months; they may last 1 month or they may last 18 months (seems to me like they've just about got 'em pin pointed, wouldn't you say??) Anyway, my understanding is I could have issues with any or all of the symptoms normally associated with an AN, including:

1. further degradation of hearing
2. balance issues - vertigo issues
3. dizziness
4. facial numbness or pain
5. headaches

So, the worst case looks like it could include a lot and it could go on for some time. Again, seems like there is no standard with this, but as the AN starts to die, it begins to become inflamed and swell - when this happens, it could impinge on the other nerves nearby.

I am working with a naturalist to include some natural anti-inflammation in my regime. I am hoping that by keeping the toxins down and the inflammation down, that I can aide in minimizing the swelling and therefore the impacts.

I'm sure there are far more qualified folks on this board with more detailed and scientific explanations, but this is how I understand it - but hey, I just work in a corporate office somewhere, so for what it's worth...

hope that helps.
Cayce

[LisaP]

Cayce,

Congrats on your treatment, I am W&W and am looking into radiation treatment.  Please post again and let us know how you are doing.  I am glad to know that the treatment went great but would like to know if you have any other side effects or symptoms from your treatment down the road.  Please keep in touch.

LisaP

[Tisha]

Great post and so glad things went well for you.  I also had my radiation with the Chang/Soltys team.  What I remember most about my week in SF was how much fun I had sightseeing, and 'vacationing" with hubby sans kids.  People always look at me like I'm lying, but it was such a piece of cake.  I estimated that I spend 10 hrs TOTAL the entire time at Stanford and the remainder of a Sat-Sat having a vacation in SF, Monterey, Muir Woods, Sausolito......

[Sue]

Loved your post, Cayce.  Informative and entertaining!   I'm so happy that there was no drama.  Always a good thing.  And you came there all the way from Perth! wow.  I know a guy, Lorenzo, who traveled from Ireland to have his treatment with Dr. Chang, so they do have quite an international following. 

I had GK, so there was a bit more drama as mine was a one shot deal.  A bit harder to deal with.  If you want to peruse my blog, the link is below. 

G'Day to ya, mate.

Sue in Vancouver, USA

[NE Farmwife]

I am glad that you had such a positive Cyberknife experience.  I haven't posted for a while but your story is just about like mine except that I am from the US.  I also had Cyberknife with Dr. Chang and his team in January of 2009.  I had a great MRI at 6 months with nothing changed at that time. Then a couple of months later, I put my daughter's Ipod to my ear and realized that I couldn't hear it as well as I could before.  After contacting Dr. Chang's office, I took two rounds of steroids.  They didn't seem to reverse the change so I have lost some more of my hearing which wasn't the best to begin with anyway.  I still have some hearing although it isn't real usuable.  The dial tone on the phone changed from a normal medium tone to a very high pitched tone.  My tinnitus is about the same--I hate it but is is livable.  Lots of times I don't even notice it but it would sure be fun to have total peace and quiet even for a little while.  (I secretly keep thinking my hearing will return--I guess I am just kidding myself.)  My lower face was really numb at the time of my treatment and for the most part I really don't notice it anymore.  I didn't have any noticeable balance problems before or after.  I had some problems with my sense of taste but I have either adjusted or it is better. My life is the same as before except for the increased hearing loss and my husband and I agree--we had a great week vacationing in California without any kids!  I would definitely recommend Cyberknife at Stamford!

[crivers]

Thanks to everyone who posted with your experience as well. It does seem like for the most part, people have had good experiences with CK.
I am past the one week mark and every day has gotten better. I can't tell if my hearing is back to where it was pretreatment, but it is definitely better than right after. I made it back to work today and stayed all day - although I could have gone home around 3PM, as I was getting tired and the afternoon headache set it. No biggie, I just did some work that was not too dependent on heavy concentration and was fine. Tinnitus is the same. Still sleeping very well. I plan to start back at the gym in earnest this week, but will pull up if I don't feel great about it.

Wish me luck...

Cayce

[Tumbleweed]

Cayce, congrats on becoming a toastie postie! Your experiences with the awesome staff at Stanford seem to be shared by all who go there for treatment. I've never met a more expedient, knowledgeable, empathetic bunch of medical staffers anywhere else. And Dr. Chang is, in my estimation, an angel sent down from heaven, totally dedicated to his patients and an expert at treating ANs successfully.

You are not likely to experience numbness or balance issues if you didn't have these before getting treated.

Your plan to take natural anti-inflammatories is, I think, great. I've taking Flavenzym (a natural blend of systemic enzymes that are anti-inflammatory) and curcumin (turmeric root extract, another natural anti-inflammatory) every day since getting CK almost 2 years ago, and I believe it has helped me a lot. When I asked Dr. Chang's assistants if it would be a problem for me to take natural anti-inflammatories, they thought it would be a good idea and encouraged me to do so. You can buy Flavenzym online at www.vitacost.com. Curcumin is available through many vendors; I buy it online at www.fruitfulyield.com.

Best wishes,
TW

[jerseyboy]

Cayce,
Thank you for those most informative posts.  Please, if you would, elaborate on what you meant by the "baseline".  Does that mean that CK treatment stabilizes symptoms at the pre-treatment level, but does not improve them?  Thank you.
jerseyboy   

[Tumbleweed]

Jerseyboy:

My understanding is that, in the majority of cases, CK stabilizes symptoms in the long run but doesn't improve them. Having said that, my balance has improved dramatically since getting CK, and about 25% of CK patients do experience an improvement in their balance following treatment. At first my balance got about 15 to 20% worse after treatment, then improved back to its pre-treatment level of functionality beginning at around the 6-month mark, followed by continued rapid improvement to where it is now -- roughly 70% (subjectively) improved compared to where it was at at the time of treatment.

My tinnitus also improved dramatically immediately following CK, although this was a very unusual outcome. My hearing improved in the bass frequencies after getting CK, although it got worse by roughly the same amount (around 15 dB) in the midrange frequencies.

Many CK patients suffer worse symptoms in the first 6 months or so after treatment due to the tumor swelling in reaction to the radiation, but this is in most cases, temporary. I view it as the bitter medicine one must take in order to gain improved health down the road.

I hope this helps...

Best wishes,
TW

[jerseyboy]

TW,
Thanks for the insightful response.  I guess I need to learn to live with my wonky head.  At least whisky helps!
jerseyboy

[crivers]

Jerseyboy,

apologize for the delay in response. Looks like a great response from TW, so this may be repeat. That is what I meant by baseline and that is what Dr. Chang meant by baseline - that wherever I stood with respect to my symptoms when I came to him for treatment (my baseline), then that is what he was going to try to keep 100% of.

I haven't heard of too many cases of improvement until TW, so for me, it made sense to maintain what I had; mostly because the symptoms weren't that bad, compared to what I heard from others.