ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: tdlight on March 17, 2016, 03:34:11 pm

Title: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 17, 2016, 03:34:11 pm
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: rupert on March 17, 2016, 03:57:47 pm
I like that plan. :)
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: CattAN on March 17, 2016, 05:05:13 pm
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. 
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 18, 2016, 07:41:44 am
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: Blw on March 18, 2016, 02:41:48 pm
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.
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: CattAN on March 19, 2016, 04:43:20 pm
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 20, 2016, 07:44:05 pm
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 21, 2016, 07:12:03 pm
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 
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 22, 2016, 08:01:55 pm
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

Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 23, 2016, 08:56:24 pm
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: GaryWNT on March 23, 2016, 11:18:10 pm
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 25, 2016, 12:37:01 am
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: operarose on March 25, 2016, 01:03:23 am
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
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 25, 2016, 10:01:01 pm
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       
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: DizzyMamaIL on March 27, 2016, 11:40:16 am
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.
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 28, 2016, 12:33:29 pm
It's been three days since my last treatment and I am experiencing what I hope is only a severe post steroid funk.  My head is in a fog, I'm having trouble thinking and concentrating, my energy is very low and I have very little appetite almost to the point of nausea.  My tinnitus seems especially irritating but that is probably just because I feel like crap.  Dr. Chang said I would likely experience a down period after the steroids wore off on Saturday, but he made it sound like it would be very short.  I actually felt pretty good on Saturday and really started to struggle yesterday (Sunday).  Maybe I am especially sensitive to these types of steroids?  I was on prednisone for a couple weeks after a back surgery once and I don't think I felt this bad; although with the prednisone I believe they tapered the dose very gradually.  This is making being at work very difficult.

Anyone have suggestions on how to combat steroid withdrawal?
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on March 29, 2016, 10:07:58 am
Wow, what a difference a day makes.  I turned an abrupt corner yesterday afternoon and was feeling nearly normal by evening.  I'm still a little shaky today but feeling 80-90%.  You know that wonderful feeling when you're congested and suddenly your sinuses clear and you can breath?  It's kind of like that.

 :D :D :D
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on April 07, 2016, 02:37:51 pm
It's been about two weeks since my treatment and I am happy to report I am doing well.  I thought for a time my tinnitus had worsened but I think it was really just the added focus I was placing on it.  I have been working out at the gym as I had prior to treatment and am back at work full time as well.  People keep asking if I feel any different.  I always tell them, "No, fortunately I don't!"  I hope this continues and I am looking forward to an unchanged MRI and audiogram in about 5 1/2 months!

 ;)
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: KaiJiaH on April 10, 2016, 07:19:06 am
thank you. I have been following your updates and feel very glad to see you are back to normal.
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on April 24, 2016, 01:04:31 pm
Thank you, Kai!

It's been one month since treatment and I am feeling no side effects.  It's getting easier all the time to forget about my little vacation to the Bay Area.  Unless something changes I will plan to report back in a couple months and again at my six month MRI. 

Don't think twice, it's alright - Terry
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on June 23, 2016, 02:00:45 pm
As promised, here is my 3 month post-CK report: 

Life continues more or less as before.  I do notice my tinnitus fluctuates but probably not anymore than before CK, it's hard to say since I am paying more attention to it (today I hardly notice it).  I have been somewhat fatigued the last four weeks approximately but I don't know that I can attribute that to the treatment.  It's more likely stress caused by a recent death in the family and having our adult son living at home again (I REALLY enjoyed having an empty nest for a while). 

I did get an interesting call recently from the local Kaiser genetics group.  Apparently my AN tripped some sort of flag for them to reevaluate me for gene mutations that might cause cancer (I am a prostate cancer survivor and I have a lot of family history of cancer), so they will be doing a panel of tests for 24 gene mutations related to breast, prostate, ovarian, stomach, colon, and a bunch of other cancers.  I had spoken to the group once before, so I'm not sure how much of a factor the AN was in their wanting to test vs. the availability of this new panel of tests that maybe fit my history.  To my knowledge there is no correlation between AN and cancer.

Anyway... Don't think twice, it's alright - Terry
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: SP on June 24, 2016, 12:32:55 am
Thanks for keeping us posted !! - so glad to hear that you are doing well !!
Yes I agree that stress exacerbates symptoms or at least the perception of them; on the other hand even with minimal stress, the fatigue after CK is very real, that for me got better after about 6-7 months.

...to continued good health...
Stella
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on June 24, 2016, 07:57:32 pm
Thank you, Stella.  When did the fatigue start for you; was it immediate or delayed?  I'm starting to wonder if it is CK related, seems like more than not sleeping well.

- Terry
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: SP on June 25, 2016, 07:02:06 am
Hi Terry....For the first 2 to 3 months i was mostly ok. After that the next few months I felt much more fatigued;  headaches ; and a bit wonky on my feet. I also had some symptoms of nausea and strong headaches likely  due to the hydrocephalus that developed. I am feeling much better these days and in a weird way looking forward to the 1 year MRI next month. Taking things more slowly and giving the body time to revover really helped ; yes getting good sleep and managing stress is really important too..
...take good care
Stella
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on June 27, 2016, 08:18:17 am
Thanks again, Stella.  That all sounds kind of like what I'm experiencing, including random mild headaches that kind of come and go.    ???  More sleep, less yard work!   :D

- Terry
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: SP on June 28, 2016, 07:58:41 am
Hi Terry, Yes!! sleep is exactly what is needed for your rest and recovery (R&R), especially after the impact of CK to your body... get as much as you can ... yard work can wait... (except it can be good exercise too - but only if you're up to it -- it took me till now (almost 12 months post CK )- to walk to work- about 15min, without losing my breath...) All in all i remember Dr Chang said 2 or even 3 years to get through the symptoms that may come up.  Now is the time to put yourself first :) and get all the R&R you can.

..here's to a smooth recovery...
Stella
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on September 22, 2016, 09:36:57 am
I received my six month follow-up MRI report (phone call) from Stanford yesterday and all I got was a thudding, “the tumor is stable.”  Whaaat, that’s it?  Where’s the death, destruction, tumor lying in a ditch report I was hoping for?  I pressed her, the nurse, a little more and said that I thought I had seen some shadowing at the center of the tumor not visible in the initial MRI; was that just a difference in resolution of the MRIs?  She said no, that is a good sign, a sign the tumor is likely dying.  Phew!  That is what I wanted to hear.  I had prepared myself for a report indicating no change at all since Dr Chang had told me with smaller tumors there tends to be slower, less visible reaction to the treatments.  That makes sense I suppose, less over all radiation (my three sessions were only 16 minutes long) would have less of an immediate effect.  So to hear the MRI in fact indicated necrosis was a huge boost as you can imagine.

Apparently Dr Chang had noted the necrosis but they are instructed to only report “the tumor is stable.”  I’m not sure why; possibly they don’t want people getting over confident and skipping the next MRI?  I was so happy to hear actual confirmation of what I thought I had seen in the MRI image that I completely forgot about the other question I had intended to ask.  The MRI report from the local Dr noted the tumor size as 4x5x5 mm compared to the initial reading of 5x3x4 mm (I know, it’s a puny little thing compared to some, but I’ll take it).  Was the size difference in fact swelling or just a difference in interpretation?  Seeing how they measure these things I can imagine lots of natural variation from one person to the next, and a millimeter is not much.  I called back this morning and was told by the nurse that at treatment Dr Chang had measured it at 6x4x4 and at the follow-up he measured at 6x4x5.  The nurse also said they allow 2 mm (not sure if she meant +/- 2, or +/- 1) for interpretation variation, so in fact he did not note an increase in size.  Whoo-hoo!  I assume the order of the dimensions (height x depth x width) is also open to interpretation which might account for the difference in the position of the larger dimension (I’m really getting in to the weeds now…).

My six month audiogram showed no change in hearing, which surprised me a little since I thought I had noticed a drop off.  I also think my tinnitus has subsided some.  The spells of mild fatigue mentioned above seem to be better and less frequent.  I do notice an occasional issue with balance still but not any worse than before treatment.  The same day I had my six month audiogram and MRI I picked up my new hearing aids (Signia Pure Primax).  I am still getting used to them but have been enjoying hearing things I have not heard in a while.  To me my hearing was perfectly serviceable (my wife might disagree) so I did debate whether they were really necessary.  The two deciding factors were; 1. Good insurance that covered 90% of the cost (they are damn expensive), and 2. The fact that most everyone has said I can expect my hearing to get worse after radiation treatment; it might take a few years but it will likely deteriorate.  If it had not been for the insurance coverage, which could go away next year, I probably would have waited.     
 
So overall,… feeling pretty damn good and very fortunate to have caught this early and to have had access to the fine treatment at Stanford.  At this point I have absolutely no regrets about my decision to go with Cyberknife treatment and welcome any questions regarding my experience.  It is my sincere hope these posts, in some small way, might help others out there struggling with the very difficult decision of which treatment to choose; the process is not easy and can, at times, be maddeningly frustrating.  Hang in there.

I will plan to report again in six months unless something changes, and once again,… Don’t think twice, it’s alright. 
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on April 03, 2017, 11:36:05 am
One year follow-up MRI and audiogram are in the books, and I am happy to report Dr Chang noted what appeared to be some slight shrinkage of the tumor (the MRI report from the facility doing the MRI noted the same).  No specific dimensions were reported.  The information was relayed the same way as before; one of Dr Chang's nurses(?) called and gave me the limited information she had.  Dr Chang would like me to have another follow-up MRI and audiogram in one year (two years post treatment).

My audiogram did show some additional hearing loss in the affected side.  At 2000 hertz I was downgraded from mild to moderate hearing loss.  It was enough the audiologist wanted to have me back in six months for a follow-up, and she also wanted me to come in to have the hearing aids reprogrammed to account for it. 

I continue to notice some mild dizziness, particularly in darkened rooms or when my eyes are closed, but nothing beyond what I had experienced before.  I do occasionally notice a kind of "fullness" (wonkiness?) or light pressure in my head, kind of like having a head cold.  I'm not sure if this is related to treatment and it could very well be something I have always experienced but never really noted before.

So, one year down and feeling good! 

Don’t think twice, it’s alright.
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: lilith on April 03, 2017, 08:36:31 pm
Well done! Keep going!

Lilith
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: SP on April 05, 2017, 05:25:09 am
Excellent news... thanks for sharing  ;D
Stella
Title: Two year follow-up - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on April 04, 2018, 09:54:59 am
I had my two year follow-up MRI and audiogram last month and am pleased.  Dr. Chang's office reported the tumor is "stable and shrinking."  That seems to be a bit of a contradiction but I guess by stable they mean not active anymore.  They want another follow-up in two years.  I took a look at the MRI and there doesn't seem to be any additional darkening of the tumor image, but I'll take the shrinkage and be very happy about it.

The hearing test was equally encouraging in that my hearing continues to be stable (no shrinkage), with no additional hearing loss.  Based on my internet research pre-treatment I may not be out of the woods regarding future hearing loss but the fact that it is stable two years out I think is encouraging.

I have had no side effects that I have noticed; still some slight balance issues but those seem stable as well.

I'm happy to answer any questions.  Good luck to all on this journey.

Don’t think twice, it’s alright - Terry
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: Gtmochi on April 04, 2018, 04:47:55 pm
Thank you so much for sharing. I head up to Stanford for CK in a couple weeks, myself. Though my AN is larger than yours, reading your experience has been very informative as well as helpful in preparing myself about what to expect!
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: SP on April 05, 2018, 04:39:06 am
Great news! it's awesome you can wait two years before the next MRI…
did you have Gadolinium injection ? my next one '(year 3 after CK) is due in August and they said no GAD is ok.

Thanks for sharing your news

Stella
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on April 05, 2018, 07:44:06 am
Welcome Gtmochi - Know that you are in good hands at Stanford and everyone there will take good care of you.  You have made a great choice.  Are you seeing Chang?  Do you know how many fractions they are planning?  Make it a vacation if you can and it will be over in no time.  Don't think twice, it's alright!

Hello again, Stella - Yes, they used contrast during the MRI and I'm fairly certain it was gadolinium.  I was a little surprised about the two years but it sounds like for stable tumors the doubling interval (6 months, 1yr, 2yrs, 4yrs) is somewhat common?  I'm not sure.
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: Gtmochi on April 07, 2018, 06:23:42 pm
Hi tdlight!

Yes! I am seeing Dr. Chang and Dr. Hancock.  I think I have made a good choice, too...but unsurprisingly, it wasn't easy. I am a little apprehensive about how the next several months and years will unfold, but in my heart I feel all will be well. I am to have 3 days of treatment. I am not sure how long each will be - I think remember the nurse practitioner saying something about 45 minutes, but I may be misremembering. I have spoken to SO many professionals during this whole journey. It's been an education on being engaged and advocating for yourself as a patient!
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: tdlight on April 23, 2019, 10:10:08 am
I'm a little late in posting but March was my 3 year treatment anniversary.  Since my next MRI isn't until the 4 year mark I kind of forgot about it (not a bad thing...).  I'm happy to report I am doing fine, no new side affects, and hearing and balance issues seem stable. 

Wishing everyone the best of outcomes.  Don't think twice, it's alright!

- Terry
Title: Re: My Treatment Journal - Fractionated Cyberknife @ Stanford with Dr. Chang
Post by: SP on April 24, 2019, 06:37:24 am
Hi Terry,

So glad you're feeling well !!!! -- its heartening to hear

to continued good health,
 
Stella