Cyberknife info needed for newbies.....

[ppearl214]

Hi all,

It has been brought to my attention that there isn't enough info noting cyberknife radiosurgery here (possibly as a "main" thread topic as we know there is much written within threads), so.... I wanted to start this thread as a way to help inform others about CK treatment as a treatment option for AN's. 

There is a patient support website for  cyberknife info:

http://www.cyberknifesupport.org/forum/

As many of us here have had successful CK treatment on our AN's, my hope is that CK patients here can share their experiences (ie: how long ago was treatment, pre-treatment issues, post-treatment issues, any other thoughts you want to add, etc).....

So, for those that have had CK treatment on your AN... would you kindly share here your CK experiences so others can learn more about it?

thanks.
Phyl

[ppearl214]

BTW, if anyone needs to know where a local CK treatment center is... you can go to

www.accuray.com

(the manufacturer of CK)

[pearchica]

My cyberknife experience was a very positive one with Stanford. First I had a ct scan, then I was called back 2 days later for the actual treatment.  I lied on an open table in a big room, with a head rest.  A mask of plastic/styromfoam like mesh is put around the face. I was able to blink and swallow quite well with my mask.  Then the technician ask me to try not to move and keep relaxed.  At Stanford they play some nice cds' to help keep your mind off of it.  Then a medium size machine comes around and starts taking aim at your tumor from a variety of locations. My sessions lasted about 38 -40 minutes each for 3 sessions total. When I compare this experience to my yearly physical, getting my teeth clean or the balance test I took prior to the cyber knife treatment, by far the ck treatment was the easiest thing I have ever experienced for a medical procedure. After each treatment, I was given a steriod to prevent fluid build up or "Edema" in medical terms.  I also loved the effects of the steriods (however, compared to others on the website I by far am in the minority on this issue!).  Please send me a personal message and let me know if I can email you directly with questions or Personal message you back.   I have my first follow up MRI August and will post my outcome at that time. However, going into this, the Stanford group was very realistic with me and said at the 6 month level they are look for some change, but nothing significant. I was also told that total tumor death could take 3-5 years.  Please let me know if I can answer any questions.  Take care, Annie

[ppearl214]

Annie, you rawk!   Thank you... and keeping fingers crossed that at your next appt, things are on track and all is heading to tumah' death!


Ok, my turn....

I had my CK treatment approx 1-1/2 yrs ago.  As my research informed me that typical CK treatment is usually 18-21Gy of radiation over 3 days, my drs noted they wanted to do 30Gy over 5 days.  Of course I was leary on that as I had not heard of anyone that had a 5-day, 30Gy treatment.... but when they shared with me about hearing preservation, etc for that type of treatment plus my comfort level with this team, I agreed to the the course of recommended treatment.

So, just as Annie noted..... I had my mask made (currently collecting dust in the attic, although thinking of hanging it on the wall as a plant holder!) and off to begin my treatment.  I brought music with me each day... took an Ativan before each treatment (ah, the "happy" pill) and actually slept my way through treatment.  Like Annie.... it was a breeze.  I was told to look for the "eye" during treatment when the CK machine moved over me....boy, that was too funny.  Hard to not laugh in that mask, but definately giggled when I saw "it".  I think the dentist drill is worse than CK treatment!  After each treatment, my best friend and I went to lunch, went shopping, etc.  The fatigue did set in on occassion and nothing a short nap couldn't cure.  I was on Decadron (sterioids) for a couple of weeks to help with brain swelling/edema and that was taped off. 

Went for my post treatment MRI and confirmed that there was no enhanced growth (mine was growing at steady/good speed), so no new growth worked for me.  Went for my MRI again 8 months later and OMG, we saw a "rim enhanced lesion" with darkness beginning in the center of the AN.... ah, beginning stages of necrosis!   My next one is also coming up and hoping that the bugger is showing more death... keeping all appendages crossed for this news.

My hearing preservation is on the money.  It's interesting that folks note to me about FSR treatment, so I am assuming they speak of the Novalis system, with a course of treatment over an approx 25-30 day treatment.  Now, CK is also FSR as FSR stands for "fractionated stereotactic radiation".... fractionated over a number of days.  So, with my "FSR" of CK treatment, I have to agree with the dr's even more now that the 30Gy/5-day dose has worked wonders for my hearing preservation.  I have had 3 hearing tests done since my treatment and my hearing remains at 100% of what it was at the time of treatment (my left ear was just below the "normal" range for hearing).  So, from a hearing preservation standpoint, I can still hear in my AN ear.

I know individual results may vary in all forms of AN treatment.  I have heard that some have had hearing diminish less than a year post treatment... I know of many that had CK that maintain their level of living as it was pre-treatment.... I have had some sharp head pain issues, some vertigo, balance issues... as I have a dual "head" diagnosis (AN and Chiari 1 Malformation), for me, it's difficult to tell which ailment is causing these issues as both have a tendency to have the same symptoms. 

So, here I sit, just shy of the 1-1/2 yr mark for post treatment... and honestly, in regards to my AN and CK treatment... I'm doing great.   I know I have been lucky in my decision and post-treatment progress.  I know many that are also doing terrific and some having some issues... but I have to note that CK, for me, was a fantastic option and my hope is that what we share here will help others in their decision making process.

Yes, I'm a hint biased towards CK as I've done very well with this option..... but I also know that should things change down the road, I have my back up plan that I am comfortable..... I know CK can be done again if need be (Gawd forbid!).. and if we need to go microsurgical, I know that the surgical options being done are great as well.

For those that want to actually see my treatment in progress, you can click on my Frappr link below in my sig line and scroll down to the pictures on the bottom left.  It shows the mask, it shows the table/CK machine and me flippin the bird to my AN!

Hope this helps.

Phyl

[Lorenzo]

About time I got back in here and contributed... Been absent for a while, taking a step back and all that.

Anyway, my CK experience. First of all et me say that if you want to read about it, I have a blog that goes from day of diagnosis until last last year. Send me a personal message and I'll give you the address.

In short, the experience of CK itself was excellent. I was diagnosed in July 03, saw a couple of neurosurgeons her in this country, and was put on wait and watch. Tumour was 22mm at the largest size. By the summer of 04 I was having increased symptoms, louder tinitus and numbness in my face. The doc at that moment told me to stick to my pre arranged appointment with him, which would have meant hanging around for another 5 months. I knew something was growing, so I decided to look into different options. Surgery was the only option offered here. So, I found CK and Stanford.

By October 04 I had made contact, sent MRIs and got approved for CK there. December 04 we travelled over and met with Dr Chang. The whole process took a week for me, as we had travelled so far, they condensed it a bit I think. First I had a consult with the usual tests, hearing and balance. Then a series of scans, both MRI and CT. Following day i had the mask fitting. Painless, no shaving of beard (one of the things I was wondering about) and not unpleasant. Weird to have something so tight on the face, but it was ok. Next day was the start of first treatment. Room is pleasant enough, subdued light and music. Ass it was Christmas, I brought my own music; who wants to listen to Christmas muzak while being zapped and restrained! I took a couple of shots of the facility and then got onto the bed. Mask was affixed to the machine holding the head firmly in place. Body wrap was put on too to keep me from moving. II was told not to move the head, or as little as possible. Not that it makes any difference, even swallowing will cause the CK to adjust position a little!

Session lasted 40 minutes. No sensation, no visual effect. Only thing was a 'onion bag' face once the mask gets taken off. That lasted for about 30 minutes before the impression of the mask faded. The other effect was an alarming tendency to go from a bright red face to a 'blanched almond' look in a very short space of time. Not serious or unpleasant. They also gave two tiny pills, steroids to avoid edema.

Same routine for the three sessions. Three days, and by Friday 10 December I was done. Immediate effect were from steroids. Bad sleeping, too much energy, constipation like never before. But, we had a great holiday in california, with lots of driving around for the best part of 3 weeks.

Headed home in early january. Went back to work, but I shouldn't have. I had extreme fatigue and some cognitive issues for a god six to eight months. I functioned  at a reduced rate, just managed to hold my job with a lot of understanding from my employer. It wasn't the best period of my life, but I managed. Not everybody has that kind of problem though.

Tumour started to show signs of necrosis by month 6 MRI, hearing went down by 5%, no swelling. By month 12 there was 10-15% swelling, worse tinitus and hearing had remained the same. I felt a lot better and started regaining some of my energy. By moth 18 swelling had stabilised and so did symptoms. At the two year mark the tumour had started to shrink back to the pre-treatment size, and a bit smaller in fact. Now, they left the next MRI session for a year, so I'm coming up to three years in December.

My energy levels are good again, in fact better than they have been for about 10 years. No problem doing anything really. I have to watch that i don't do too much or I have a fatigue attack and can nap anywhere at any time. Otherwise, it has been a perfect experience, a rather difficult recovery initially, and now I feel better than I have for a very long time! Only effects are from tinitus and hearing loss.

Forgot to mention, An is now getting as dead as the dodo, necrosis is continuing as of last MRI in Dec 06.

Hope this helps too. If you want any more info, send me a personal message.

Lorenzo

[marystro]

Inspired by my fellow CK ANers (Phil, Lorenzo, Annie, howdy!)...

My AN was discovered 1 year ago after having some muffling of hearing and slight hissing sound for 9 months.  My ENT sent me for an MRI and voila - you have a "growth" in your brain!!  I found this forum, CK, my mentor Mark, Dr. Medbery and Dr. Spunberg on the CK Support Group Forum and Dr. Chang (in person) at Stanford all within 1 week from the day I found out about my AN.  It was a roller coaster ride for about 1 month - from thinking I was going to die (first 2 days) to CK treatment at Stanford (1 month later)!  Since I started having some intermittent sharp nerve pain 2 weeks after I found out about my AN (I guess the AN was pushing against some nerve), I decided I did not want to wait.   

The treatment was a breeze.  Best medical (or non-medical as it felt like I was going to a spa treatment  ) experience I had.  Day 1: I had CT.  Day 2 - 4: 30 - 45 mins of CK treatment with my favorite music from my own CDs!!  They gave me a little purple pill after each treatment.  I was able to go sightseeing, sleep well, eat well the whole week.  The entire Stanford medical team is top notch.  I could not have asked for anyone better.  Dr. Adler, Dr. Chang, Dr. Soltys are my heroes.  Larry, Elizabeth are my angels.  They are the best  !!!

I have no additional residual side effects the first 3 months post CK.  3-6 months later, I started having minor intermittent numbness, louder tinnitus, lower hearing, occasional big fatigue.  I think the swelling of the AN or may be some collateral damage to the surrounding tissues are the culprits.  I don't have the sharp pain and fatigue any more but still have the louder tinnitus, some numbness and hearing degradation - they are not that bad overall.  In Dr. Chang's words, my symptoms are "mild" relatively.  6 month post-CK MRI showed signs of necrosis with no change in tumor size.  My 1 year post-CK MRI will be coming up in August (in 2 weeks).  I don't expect the tumor to be smaller nor my hearing better given the symptoms.  However, I am still glad that I chose CK considering the alternative (microsurgery)!! 

Looking back: I never took a day off because of my AN except the treatment week (kind of like a mini-vacation at the Bay Area).  I did not take any medication for AN either.  I continue to work full time and my job requires me to take long haul flights every month or so (San Diego to India was the longest trip after CK) and flying has no adverse effect on me.  So, life is the same but now I could use the excuses like "I have a brain tumor so don't bother me!!"   

So, you see, I am lucky to have found this forum and there is great friendship here.  This is a family!  You guide me along my AN journey and in my case, CK works for me.  As Dr. Soltys said "there is no guarantee" but I hope for the best and that I will be thrilled if I can just follow the footsteps of Lorenzo, Mark, Phil, Annie, etc. I know I will be OK  !!!

[BevM]

Thought I would chime in!  I agree with everyone who has posted regarding CK.  The process for and actual treatment were easy.  The Research and chain of Doctors before discovering the AN was the hardest part.  I had my CK at Stanford in October '06 and my 6 mo. follow-up in April did show signs of Tumor death.  I still have my symtoms, Tinnitus, balance, head and neck pain.I've started seeing Headache specialist and they were improving until I flew to Southern California last week.  The flight down was fine, but the flight back was difficult.  I think the pilot has A.D.D.; I appreciate that he was saving time but the quick decent caused the worst ear pain I have ever experienced ( close to child birth!!!).  That was on Saturday and my ear and head pain have not settled down.  That was the first time to fly since discovering the AN.  The balance, neck and head pain improved after seeing the specialist. I see her again today and hope that the Airplane experience did not do irreparable damage. Have not missed any work days or change my lifestyle to accomodate my symtoms but I do have to manage them. I don't think I would have done this well with open surgery. I welcome a private e-mail if you have any questions or would like more information about my experience.

Best Wishes,

Bev

[ppearl214]

thank you all, SO very much, for sharing your personal experiences with everyone. My hope is that this info is helpful for those in the decision making process, should CK be considered as a treatment option.

I have to note that I was watching the local Boston TV ABC-affiliate and saw a TV ad for the CK Unit at Beth Israel/Deaconess, here in town.  Well, as you all know, I have a bit of a kin-ship with them and the ad noted to go to the TV station website for info....

so, I went to the website and there is an absolute fantastic short video of CK at BI.  It's got a terrific interview with Dr. Mehatevan (my fave radio-oncologist), my fave Oncology Nurse (Terry Barden)... and a cancer patient working with Shelly, the CK tech, stepping him through everything.  It shows bits of his treatment from start to finish, with interviews of him and his wife.

Overall, the video gives terrific insight to a CK treatment room, what the CK machine looks like in action, how the technology works, and the support of all CK treatment teams.

Here is the link to the video:

http://www.thebostonchannel.com/bethisrael/index.html

I hope you all find it informative.....just wanted to share it with you all.

Phyl

[Windsong]

Thanks Phyll for posting this. It is always heartening to see that modern medicine is making strides forward in treatments. I found this particularly poignant as I lost my godfather in the early 80's to pancreatic cancer. From diagnosis to his passing was not a long time. It was hard. I'm lucky today in that my summer retreat was built by him  before he built another down the way, and so i have many good memories close at hand whenever i am there. Pancreatic cancer was a diiffficult thing more than 25 yrs ago and this shows how far we have come for me, personally. I wish this (CK) had been available then....

It's always good to be reminded that medicine /treatments are moving forward in leaps and bounds. The same is true for Ans from 40 -100 and more yrs ago to now  .... look at us...  here we are, discussing pros and cons of treatment and choices...  that's good!
windsong

[BeckyB]

Thank you ppearl for starting this thread.  It is coming a little too late for me.  I went with FSR as my choice because I wasn't sure where was best to go for CK treatments.  I had a time frame set for when I wanted treatments done and did not know enough about CK to go that route.  For me, FSR seemed better than GK and surgery so I went with FSR.  CK sounds promising though.  Like House is known in California, maybe there is a CK clinic which will become well-known because of this web site.  Time will tell.

[ppearl214]

I'm glad the link.. and this thread is helpful... that was my goal in posting it and hoping others that have had CK will also chime in as well.

Phyl

[aardvark]

My new ENT sounded extremely stressed when he called to tell me that my MRI showed a 15mm AN, and that I was to make an appointment at House ASAP.  The ENT kept saying "it's benign"....I kept hearing "it's a brain tumor".

It didn't take me long to find this forum, thankfully.  By the time I had my consultation at HEI (where they recommended surgery) I had already begun researching other options - FSR, GK, CK.  I had ruled out W&W because my equilibrium seemed worse every week.  I chose CK at Stanford based on several factors - the medical school's reputation, Dr. Chang's experience, the fact that treatment would be spread over 3 days, and the good statistics for success.  I felt hugely relieved the instant I made my decision.  I looked forward to my treatment with enthusiasm instead of apprehension. 

 I make this point because normally I'm a person who's always second-guessing myself - waffling, fretting, seeking input from others to validate my choices.  But CyberKnife felt so RIGHT for me personally, that I had no doubts at all.  Nor did I have a problem defending it, even though many friends and most of my doctors thought I was crazy.  "Don't you want it OUT of there?" they'd ask, even those who were aware of the potential complications associated with microsurgery.   And I do acknowledge that getting rid of the thing certainly has to be an important consideration for those facing this decision-making process.  For me it was an easy call, because all I really cared about was arresting its growth. 

And CK appears to be doing exactly that - I'm almost 2 years post-op, and though my 6-month MRI showed the expected swelling, in the 12-month and 18-month studies it's back to pre-op size, with necrosing.  It's been exactly 2 years since my diagnosis.  Two years ago I sat at this keyboard in a panic, frantically searching for answers, and I found them right here. 

Thank you, all of you.

[Sue]

If for some reason, God Forbid, that my GK backfires somehow, I would certainly look into CK since there is now that option right here in my town of Vancouver, WA.  My doctor is using the CK machine and he could certainly tell me if I could have that done instead of GK.  Hopefully that won't be an issue.....but who knows?

Sue in Vancouver USA

[ppearl214]

aardvark, thank you.. and continued wellness to you!

Sue, praying there is no Gawd-Forbid..... since you and I had treatment at approximately the same time, I'm side-by-side with you and know you are going to do great!  

Thanks all for continuing to share your experiences.  I do hope newbies that are researching find this helpful.

Phyl

[sgerrard]

I do hope newbies that are researching find this helpful.

As a practicing newbie, I certainly do. I am also finding that the CK docs are very accessible, something that gives me comfort and confidence.
 
Your link for the CyberKnife support forum is very useful, since there are practicing doctors there that answer questions every day.

http://www.cyberknifesupport.org/forum/

Plus, that site also has a page with descriptions of several of the participating doctors, two of whom have email addresses, so you can contact them directly, and arrange for a review of your MRI and tests.

http://www.cyberknifesupport.org/about_the_doctors.html

I have been in contact with Dr. Chang at Stanford, and he has been very helpful. I am a little worried because he seems to respond to emails at any time, weekends included. Dedication is good, but I hope he also gets a little rest now and then...

Thanks for setting up the thread.

Steve