Author Topic: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang  (Read 14872 times)

tdlight

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Over the next week, and beyond I suppose, I will use this topic thread to journal about my treatment experience.  I have elected fractionated (three sessions) CyberKnife at Stanford with Drs. Chang and Hancock.  You can see from my signature I have a relatively small tumor (5x3x4 mm), left side, with hearing loss at higher frequencies, tinnitus and some slight balance issues.  Because of the location of the tumor near the cochlea, the amount of hearing loss I have experienced in a relatively short period of time and the fact my hearing in my unaffected ear is not that great I have elected to be proactive and seek treatment right away as opposed to wait and see if there is growth.  I am concerned about what another 1 or 2 mm of growth would do to my hearing, balance and tinnitus.  I am a 52 year old male in otherwise good health, employed full time with two college age kids (although one has yet to figure out he wants to go to college; boys DO mature slower than girls).

Day 1

So my journey begins today, literally. We leave after my wife gets off work this afternoon for California.  We will be driving down I-5 from the Portland area and staying in Red Bluff this evening.  Tomorrow I have my first consultation with Dr. Chang at 11:30 AM, an MRI and then a consultation with Dr. Hancock at 2:30.  From there we head to Monterey for a relaxing weekend.  The rest of the schedule is as follows: Monday AM is the CT scan, face mask, and simulation; Tuesday I have off while the doctors develop the plan; Wednesday I have my first treatment at 11 AM; Thursday is treatment two at 9 AM; and Friday the final treatment at 9 AM followed at 10:30 with a final appointment with Dr. Chang.  After that it's across the Golden Gate bridge and up Highway 1 for a leisurely trip home via Point Arena and Bandon Friday and Saturday nights.

My next entry should be tomorrow evening from scenic Monterey!  I welcome any questions or comments along the way.

Don't think twice, it's alright - Terry
« Last Edit: March 18, 2016, 07:43:15 am by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

rupert

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I like that plan. :)

CattAN

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Good luck Terry.  May I suggest that you select music to play while you are getting your treatments? Playing music helped me get through my treatment.  I wasn't prepared though for the setup at Stanford, it required a bluetooth device. 
Right side AN diagnosed 6/7/2015
12x11 mm
Swelling to 15x13 mm @ six months
SSD, tinnitus, some balance issues....
~~~~~~~~~
Stanford CyberKnife1 9/2/2015 (single fraction)
Dr. Steven Chang & Dr. Iris Gibbs

tdlight

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Day 2

(part 1)

Thanks Rupert and Catt - I was wondering what kind of connection might be required for the music... Bluetooth off the phone will work!

Uneventful trip down last night, but a somewhat sleepless night.  On to Palo Alto and more tonight.

(part2)

We made it to Monterey finally and I will try to boil down the day succinctly since I am wiped.  Not a great nights sleep as indicated but we made it to Dr. Chang's office with 20 minutes to spare; traffic for the bay area was not bad, heavy but moving steady the whole way.  We met with Dr. Chang and three of his staff at various times.  He was very reassuring with my choice to be pro-active in my treatment, pointing out that the smaller the tumor the more likely for positive outcomes.  He indicated that most people see true side effects in the 6-18 month range and most short term effects are more stress related.  (I think I can relate to that.)  He also talked a little about how tumors that die off slowly generate fewer side effects, where as tumors that show early signs of necrosis tend to generate more issues.  He was very personable and easy to talk to.  He really talked up the radiation oncologist I would be seeing next, Dr. Hancock, indicating he was one of the most experienced that he works with as well as one of the most personable. 

After Chang it was off to the main hospital for a quick MRI.  Unfortunately since they were fitting me in to the schedule we ended up waiting for about 90 minutes.  The MRI staff and tech were all very helpful, warm and understanding of my schedule.  They did get me in and I made it on over to Dr. Hancock's office with a minute to spare.

It was a quick walk over to the cancer center for my appointment with Dr. Hancock.... (Stanford Medical is huge BTW, and many of the buildings are new or under construction. Chang's bldg. just opened in December and I think the cancer center was just before.)  I had heard Dr. Hancock was one of the more experienced docs and that he had been at Stanford for over forty years, so when this kid walks in to the exam room and introduced himself as Dr. Harrison I commented, "I didn't think your were Dr. Hancock, his grandson, maybe..." I think I may have offended him.  I think he must be an intern because he went through the whole question and exam routine and then Dr. Hancock came in and did mostly the same.  The "intern" and I did talk about how CyberKnife was sort of developed at Stanford and he mentioned that Dr. Hancock claims to have been present at the first CyberKnife treatment.  So, in short I felt like I was in good hands.  Hancock was a grandfatherly type and his gray hair and easy going demeanor put me instantly at ease.  He talked about the potential for some of the short term effects I might experience (nausea, although they do give meds for that, and light flashes from the radiation passing near the retina) which was very interesting.

All-in-all the staff and facilities at Stanford, as we have all heard, are top notch.  I was particularly impressed with the warmth and compassion of everyone we were in contact with.  Now, to bed... it has been a long day and I am looking forward to sleeping in before doing some sight-seeing tomorrow (Saturday).

Don't think twice, it's alright - Terry
« Last Edit: March 18, 2016, 10:54:36 pm by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

Blw

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When I had my GK, they piped it right into the bug zapper. They used Pandora, and because the painkiller for the head frame wore off, I took my 33 minute bake and counted down 10 songs. I was coming out of that machine with or without the table moving once my time was up.

CattAN

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Terry,

Good update.  Yes, immediately prior to treatment you do get a steroid pill and anti-nausea pill.  I found that the steroid pill gave me energy, so when I was done with the CyberKnife session I went to the shopping center and walked around for an hour!  I also purchased a pricey item, normally I would not have bought it...so beware  ;)

CattAN
Right side AN diagnosed 6/7/2015
12x11 mm
Swelling to 15x13 mm @ six months
SSD, tinnitus, some balance issues....
~~~~~~~~~
Stanford CyberKnife1 9/2/2015 (single fraction)
Dr. Steven Chang & Dr. Iris Gibbs

tdlight

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Days 3 & 4

Thanks, Catt.  ;) I will try to avoid the shopping center but I do plan to walk around campus.

I will keep this short since you probably aren’t reading this to hear about my vacation…  We had a very nice weekend in Monterey.  On Saturday we drove out to the end of the peninsula and then down 17 Mile Drive to Pebble Beach and Carmel for lunch.  Then a cruise down the coast in to Big Sur with amazing views the whole way. We saw seals and a pod of whales making the migration north.  We returned to Monterey for a nice dinner down on Cannery Row and a little sea otter viewing.

Today (Sunday) we had a nice breakfast overlooking the bay then packed up and headed north toward Santa Cruz with stops for groceries and at one of the great little farm stands in the Salinas area (artichokes 10/$1!).  From Santa Cruz we took one of the smaller roads north through some redwood groves and funky little mountain towns.  We arrived at our home for the next 5 days, an AirBnB, about 3:00.  The accommodations are perfect; a little guest house/studio in the Los Altos hills with a view all the way to the bay.  We have great hosts that even provided a few groceries and a nice bottle of wine.  We couldn’t ask for more and at $130/nt it has to be the bargain of the century.   It looks like we are maybe 20 or 30 minutes from Stanford, so with a 7:15 appointment tomorrow we will need to leave around 6:30 to allow for parking. 

It was a very relaxing weekend and I almost forgot why we are down here, but the anxiousness started to creep back in this morning until something odd happened.  You may have noticed my salutation on these posts; Don’t think twice, it’s alright.  That is the title of a Bob Dylan song that I have adopted as my treatment theme song and personal mantra.  One morning several weeks ago while I was emailing the doctors I had consulted with to let them know I would be seeking treatment at Stanford I was also listening to Pandora.  As I hit send on the very last email Don’t Think Twice, It’s Alright started playing.  I listened through to the end and thought, that’s perfect!  So this morning while we were eating breakfast on this wonderful outdoor patio enjoying the view there was an older gentlemen setting up a little sound system.  Then he pulls out an acoustic guitar and starts playing the most wonderful relaxing music; I thought this is exactly what I need!  Then the third song started, and of course, it was my theme song/mantra live and masterfully rendered.  I was at peace again and the guitar player received a very nice tip.

Tomorrow the journey continues! (I guess that wasn't so short.)

Don’t think twice, it’s alright - Terry
« Last Edit: March 20, 2016, 09:10:38 pm by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

tdlight

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Day 5

We were out the door this morning a little after 6:35 and made it to the parking garage in less than 20 minutes; then the shuttle bus over to the cancer center and we were there in plenty of time.  I learned later the valet parking in front of the cancer center is free if you are receiving treatment (so there's another 15 minutes of sleep in the morning).  Things are a bit of a mess right now with all the construction at the medical center. 

It was a quick and easy morning.  I had an IV put in then waited for the CT.  While I was waiting both Dr. Hancock and Dr. Harris happened by and said hello.  I was taken in to the CT scan room to get my mask made and the scan.  The mask was interesting.  It's just a very warm plastic mesh they stretch over your face and as it cools it stiffens to create a very strange looking... well, mask.  And yes, I do get to keep it as a souvenir.  A quick scan was done and then they injected the iodine based contrast in to the IV, which if you have never had it is a strange warming sensation, but not a pleasant kind of warming.  Then it was back in for another quick scan.  They pulled the IV and I was out the door in less than 45 minutes.  I kind of felt like, "That was it... what am I supposed to do with the rest of my morning?"  I was under the impression it was more like a two hour process. 

It was a nice morning so we walked over to campus.  The quad with the sandstone architecture is very impressive and it's spring break so there was hardly anyone around.  We wandered over to the bookstore and I picked up the obligatory cardinal colored Stanford t-shirt. (Although I never found the one that says, "I went to Stanford for fractionated CyberKnife treatment, and all I got was this lousy shirt.") We had a little breakfast in the bookstore café and then headed over to the iconic Hoover tower for a quick trip up to the observation deck (all of 285 ft high).  On our way back to the car we stopped in at the Cantor Art Museum (free admission).  There we learned a little more about the history of the Stanford family, the University, why it's often called "the Farm," and saw some very impressive art and artifacts.  The extensive Rodin collection, including full sized casts of The Thinker and The Gates of Hell, is probably the most impressive.  A large part of the original museum and many of the original pieces were destroyed in the 1906 earthquake.

So, we have tomorrow off and have not decided what exactly we are going to do, but I do know I will be sleeping in.  I am on vacation after all.

Don't think twice, it's alright - Terry 
« Last Edit: March 21, 2016, 07:15:27 pm by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

tdlight

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Day 6

Tuesday, my day off, but really they have all felt like vacation days.  Two big pieces of news today; I received a call from my Cyberknife scheduler informing me they needed to move my appointments around due to some urgent cases that came in this week; and it looks like Hillary Clinton will be speaking at Stanford tomorrow at 11:15, the day of my first treatment. My appointment is at 10:30, so hopefully traffic isn't completely destroyed.

Today we went to Filoli, down to Half Moon Bay for some lunch and then up the coast to the Cliff House for a drink and appetizers.  We took Skyline road home for some amazing views of the ocean and bay.   

Tomorrow I get toasty!

Don't think twice, it's alright - Terry

Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

tdlight

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Day 7

One treatment down, two to go.  No issues with politician induced traffic.  Dr. Hancock met me after I arrived and walked me back to  the treatment area and introduced me to the radiation tech; she informed me my treatment would only take 16 minutes!  I was a little shocked and even Dr. Hancock looked a little surprised (he said that would be the case with the next two also).  I assume it's due to my tumor size that the treatment time is so short; I will quiz Dr. Hancock about that tomorrow. 

We walked in to the treatment room with what looks like a large industrial robot and a table.  They had me lay down, put the mask on and asked what kind of music I wanted to listen; classical, jazz, pop,...?  It was then I realized I wouldn't be listening to my own music so I just chose classical.  I then realized I had not received the nausea and steroid medications; they said I would get them afterward.  Also, I noticed they did not offer me any sort of anti-anxiety meds which would have been nice but not really necessary.  OK, so here we go... everyone left and the arm started moving slowly around, stopping periodically and making a buzzing noise.  I just focused on the giant photo of a lake in the Canadian Rockies (I think) on the ceiling and it was over in no time.

Afterward I waited about five minutes in the waiting room for the Dr. with the meds.  Dr. Hancock came out and chatted with us about his upcoming trip to Oregon with his daughter to look at colleges.  I got my meds and we were off.

The steroid meds have made me a little chippy (as my wife would say), but I am taking care of that with a little home remedy called vino rojo.  I am expecting the same experience tomorrow so my entry should be much shorter.

As far as activities afterward; we went to the Rosacrucian Egyptian Museum in San Jose (some interesting pieces including a number of mummies, but an odd place for an Egyptian museum); then a movie to take our minds off everything.  Hoping for a good nights sleep!

Don't think twice, it's alright - Terry
« Last Edit: March 28, 2016, 02:20:24 pm by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

GaryWNT

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Terry, you had the same team as I had! I felt very confident in both doctors and found Dr. Hancock to be very personable and reassuring. Do keep us informed of your progress post CK!
Best wishes!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

tdlight

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Day 8

Second verse same as the first except they gave me the meds ahead of time and I asked about using my own music.  Two options regarding your music, bring your own CD or sync up with their Bluetooth speaker.  I couldn't seem to sync my phone and I didn't want to delay any further so I just grabbed one of their Beatles CDs; for 16 minutes that was great.  Tomorrow I bring my own Bluetooth speaker and finally get to play my custom playlist.

I did ask Dr. Hancock about the brevity of the treatment and he seemed to think it had to do with a concentration just on the center of the tumor which requires less time (or something like that).  I will quiz Dr. Chang about it tomorrow.

We spent our afternoon in Berkeley and then watched the OSU Beavers take on the Cal Bears in Baseball; the good guys (the Beavs) didn't fair so well against Cal's ace. 

One more treatment and I guess I am a posty toastie?

Don't think twice, it's alright - Terry
« Last Edit: March 30, 2016, 10:36:52 am by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

operarose

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Dear Terry,

I want to thank you for taking the time to write this diary. I am on watch and wait for the time being but if there is growth after my next MRI in May, I will be at Stanford availing myself of Dr. Chang's expertise/Cyber Knife. I met with Dr. Chang and Dr. Soltys at the beginning of December for a consultation. Your experience and especially all the detail is invaluable to me.

Julie

tdlight

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Day 9

Julie - My pleasure.  It has been therapeutic for me to write it all down.  I'm glad someone is getting some value besides me!  Feel free to ask any questions you might have; I'm glad to help.

Round three was exactly like #2, meds before, but this time I brought my own blue tooth speaker and got to listen to MY playlist (Pink Floyd, The Who, Weezer, Lumineers, another Who song and that was about all there was time for).  Dr. Hancock was there again for my treatment which was kind of surprising; super nice guy.  Afterward I took my mask and headed over to Chang's office.

I did ask Dr. Chang about the brevity of my treatment and he used an analogy I liked.  He said it was like painting a wall, the bigger the wall the longer it takes.  With a tumor, though, you are talking about a three dimensional wall and volume needs to be factored in.  Volume to treatment time is not a linear relationship though.  Another quick evaluation from the nurse, a hug from her and I was off.

So that's about it.  I'm a posty toastie as they say.  I feel no different except for the side effects from the steroids and anti-nausea meds which should wear off in a day or two.  I will update periodically as I think about it or as things change.

After treatment we headed up Hwy 1 along the coast from Muir Beach to Point Arena, stopping for a late lunch in Bodega Bay (where Hitchcock's The Birds was filmed).  If you ever have the time to drive Hwy 1 north of S.F. it is one of the most scenic drives around; much more spectacular than our drive down to Big Sur.  Even the sections inland were just magical.  Point Arena is the funkiest of little towns with a beautiful old art deco movie theater and a crazy counter culture vibe to it.

Lastly, if anyone is looking for a very reasonably priced AirBnB in the Palo Alto area, I have a good one for you. A nice little studio apartment in the Los Altos Hills area about 15-20 minutes from Stanford Medical.  It's not real fancy but it is a very tranquil setting and the hostess is the most gracious person you could hope for.  Here is the address:  https://www.airbnb.com/rooms/9473116?s=CQFM2oA7

So, once again; don't think twice, it's alright - Terry       
« Last Edit: March 30, 2016, 03:24:19 pm by tdlight »
Diagnosed 1/15/16
Left Side, 5x3x4 mm, 1 mm from cochlea
High frequency hearing loss (still useful), tinnitus
Three fraction CK at Stanford completed 3/25/16

DizzyMamaIL

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Thank you for posting.
I wish I had read about the iodine contrast before I had it on Friday as I was not prepared for that feeling at all and it was quite unpleasant.
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

 


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