Author Topic: CyberKnife Journey at Stanford  (Read 27784 times)

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #45 on: August 26, 2018, 08:04:45 pm »
Well, nothing too exciting to report at the end of my 4th moth post CK! I am feeling well, and have not had to roll back any of my activities, work, or life.

Certainly I have days in which I get a bit emotional and edgy in  response to the symptoms I’ve always had - whether they worsen or fluctuate or not.  For the most part, the symptoms are not new - nor are the caused by the CK. They are just there - a constant reminder of my little hijacker.

The only new-after-CK issue I have had has been some twitching under the eye and on the eyelid. Neither are both at once, and neither are all the time. Also, neither are painful. More of a nuisance and just another reminder of the AN. Occasionally I’ll get a sensation of twitching in my chin or eyebrow - neither can be seen when I look in the mirror. If you have long hair, you’ll know what I mean when I say it’s as if a strand needs to be wiped away from that spot - but it’s not there.

So far, I haven’t had a full-on facial spasm - for that I am grateful.

As a precaution, I contacted Stanford about the twitching. The nurse with whom I spoke told me what I already suspected - that it was likely the nerve being irritated by the AN or the treatment.  She said if I wanted, they would prescribe steroids. I asked if it would be unwise to simply ride it out, as I planned. I was told that doing so would be fine. Not taking medication is my preference - unless necessary.  At this point, the twitches don’t happen every day or all day. They are merely annoying.  I choose to assume they are going to stay that way and eventually go away.  I also choose to assume that this is just the CK doing its work, and that it is a good thing.

Which brings me to my most salient point. Up till now, I have been fortunate to not encounter any real physically debilitating issues that I know many AN patients have. For that I am grateful, and realize that I am lucky. Thus far, it’s the mental/emotional aspect of this journey that has made it a real test of my grit. Grit I’d quickly run out of if it weren’t for my family, friends, dogs and horses (seriously) cheering me on.

So if you are reading this, wondering if post-CK life will be wretched….I can only tell you that at the close of my 4th month post treatment it’s been no worse than it was before CK - physically. Mentally and emotionally, it’s worlds better than what I (and everyone else with an AN) experienced at diagnosis. Which, as far as I am concerned, is just fine.  Of course everyone does not have that experience, and things may change, but so far, so good :).

Hopefully the next time you are subjected to my pseudo-diary will be this time next month!

PS - I forgot to mention my hearing. It seems *about* the same  as when diagnosed. It was a mild hearing loss then, and probably still is now. Maybe a touch more loss. But I can understand people when they speak from the AN side (as long as there is not a ton of ambient noise), as well as hear the music coming from my headphones at the gym. Not perfectly, mind you, but hey - I'll take it :).
« Last Edit: August 26, 2018, 08:11:32 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

gary.s

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Re: CyberKnife Journey at Stanford
« Reply #46 on: August 27, 2018, 08:41:07 pm »
Hi Gtmochi,

Well it seems like we are both feeling similar things at this four month time zone. I am having numbness along the right side of my face, especially between my AN ear and the corner of my eye. My right eye is watering a little, and it just feels weird. Hopefully it does not impact my ability to open and close my eye lids. My hair is somewhat long, and I also have the phantom hairs tickling my AN ear. Each time I go to wipe the hair away, it is not there. I have daily ringing in my ear, although I have learned to ignore it. This is just an indication that the tumor is swelling and responding to the radiation.

I am really doing okay and not complaining about all of this. These are just the issues at the four month mark post Cyber Knife radiation. All is well and I am looking forward to cooler weather here in the Arizona desert.

Gary
Mild symptoms on right side July 2014
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #47 on: August 27, 2018, 11:05:14 pm »
Gary! Wow! We are so having a parallel experience! It's pretty incredible. I did not think of the feelings I was having as numbness, but you know, after you've mentioned it,  that may be what it is. A little - I can still feel when I brush things on the side of my face (because of course I have to test and make sure all the time) but it for sure feels odd enough that I keep testing to make sure things seem to be working mostly as they should.  I so hope it does not impact your ability to close your (or my!) eyelids. It is so scary - the uncertainties regarding what is going to happen next.  It's like a roulette of things that can happen that I'd rather not win!

My tinnitus is daily too - but mostly an ignorable sound. Although it sometimes acts up, it usually dies down eventually. Thank goodness!

How reassuring that you think all of these sensations are because the tumor is swelling too!

Anyway, I am super glad you are well!

Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

SP

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Re: CyberKnife Journey at Stanford
« Reply #48 on: August 28, 2018, 07:06:13 pm »
Hi Jessica,

I really like reading your insightful diary entry, you have a talent for capturing the details of your journey that are often similar to mine . It so good to hear you are keeping as positive as possible. It sure sounds like you have tonnes of grit to be handling this roller coaster journey so well. If you can ride out the variety symptoms & effects of the AN / CK / life in general -- then you are going well. Of course there may be some lifestyle adjustments due to things like hearing decline and wonky head feelings, but if these do not require a medical intervention --- then in my view that's a big plus! Keep well.

@Gary - good to hear you are doing well and keeping positive too! it's heartening to be on this crazy path with positive people.

always moving forward,

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #49 on: August 28, 2018, 09:08:31 pm »
Hi Stella,

Oh gosh - thank you! I like to write  :).  I am lucky to have a cheering section that keeps me going in the grit department. I am quite nervous about the hearing decline and wonky head - but not feeling alone and having positive people to chat with here makes everything worlds easier! So thank you for your support, too! Keep fighting the good fight (ha!), and I am really hoping all is aces at your next ophthalmologist appointment  :).


Jessica
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #50 on: September 26, 2018, 03:43:40 pm »
Woot! Month 5 post-CK passed by fairly uneventfully.  As I mentioned in my last update, there were some eyelid and under eye twitches, as well as some numbness at and around the temple during month 4. All of that was not there before CK and continued through about half of the past month. And then they went away.  Occasionally I’ll get what feels like a flicker of the nerve in my lower lip - but it’s not something I can see in the mirror.

As far as I can tell (and have read here on the forum) symptoms are cyclical, waxing and waning as they please. I’ve had quiet periods before - but here’s hoping this one is here to stay!  All in all, I feel pretty darn good. I currently have the same symptoms that prompted me to go to the doctor and subsequently get diagnosed: constant tinnitus, a little ear fullness and a little tingling in the corner of my mouth. The ear fullness comes and goes - and seems to have been reduced as of late --- hurray!

The hearing loss we discovered during diagnosis is, of course, still there. I think it’s reduced since then, but I can still use the phone on my AN ear, as well as hear sound in my headphones. For sure certain tones have totally dropped off the radar in that ear, and as far as headphones go I wish I could turn up the volume on one side and not the other. As far as the hearing of voices on that side, it's not as crystal clear as the other, but it functions. Less so in a noisy environment though. There is some distortion with certain pitches and tones, but not all. I suppose I’ll know exactly how much the hearing has been affected thus far when I get the 6 month audiogram in October along with my MRI.

Fingers crossed the next time I update is post-MRI and audiogram in October!
« Last Edit: September 26, 2018, 03:52:27 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

gary.s

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Re: CyberKnife Journey at Stanford
« Reply #51 on: September 27, 2018, 07:46:26 pm »
Hello Gtmochi,

Sounds like you are doing just fine after five months. As each month goes by things seem to be okay with you and kind of consistent. The hearing issue is a real bummer, and I don't think there will be improvement as time goes on. It is great that you can still use a cell phone in the AN ear, that is amazing. I have not been able to do that for several years, so you are fortunate. I know you have to take another MRI next month, mine is for November. That is because I had one taken one month after CK, so the six month mark hits in November for me. Anxiety prone issue, but here's hoping that all is well. Stay strong and keep riding.

Gary
Mild symptoms on right side July 2014
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B

SP

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Re: CyberKnife Journey at Stanford
« Reply #52 on: September 30, 2018, 08:26:03 pm »
Hi Jessica,

It's great news!!, so glad things are tracking well...your positive attitude is your best ally!
the hearing loss for sure is a tricky one to navigate, it was a big adjustment for me too, but at overall is usually manageable.
totally agree: "symptoms are cyclical, waxing and waning as they please" : lets vote for more waning :).

I've got my fingers crossed for your MRI & Audio coming up.
Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #53 on: October 01, 2018, 07:15:32 pm »
Hi Gary,

You are right - it’s been pretty consistent so far. I’ve had bobbles and bumps, but for better or for worse I try hard not to focus too much on those.

I agree about the hearing getting better -- that’s definitely not happening. I am lucky I can still hear the phone on that side, but it’s for sure not perfect. When it comes to my upcoming MRI and audiogram, the worry is so real. I am trying to prepare myself for the inevitable, reduced hearing report (relative to my initial audiogram) as well as what may be revealed by the MRI. But more than anything I just want to get it over with and know what is happening to the dang thing instead of torturing myself with scenarios good, alarming, and everywhere in between.  Thank goodness for horses - they keep me centered like nothing else! We are fortunate to be able to ride.

It sounds like you are traveling a similar road - ups and downs, but all things considered, a middling one. Here’s hoping things take an upward turn from here!


Jessica

Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #54 on: October 01, 2018, 07:38:26 pm »
Hi Stella,

I feel a bit awkward with my uneventful news, to be honest! So many others at this point have had major difficulties. Depending on the day, I either count myself lucky or begin to fret about the other shoe dropping.   

The hearing loss for sure is a big source of anxiety, but I have begun to realize that some of that is about grieving its decline. At the outset of this journey, doctors advocating surgery (while also telling me I was a candidate for either) would tell me something along the lines of, “if you are thinking surgery will kill your hearing and CK will save it,  you are wrong and will lose it either way.” I would answer fiercely, “If hearing is the price to pay for a successfully radiated AN, that’s a fair trade.” I realize successful treatment and hearing loss are not mutually inclusive, but it was a deal I made with myself at that time. The reality, of course, is that I am sad, angry at the unfairness, and scared of the inevitability. I can do nothing but wait and see how things develop, both with regards to my hearing and what will be revealed by the MRI. I am preaching to the choir, of course! Every AN patient knows what this is like.

That said, it’s reassuring and calming to hear from someone on the other side (like you and Gary) that, though a big adjustment, it’s pretty manageable. And going to be ok. Different, but ok.

I am hoping and wishing for more waning for the both of us! Thank you for the positive thoughts!

Jessica
« Last Edit: October 01, 2018, 07:42:11 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #55 on: October 17, 2018, 07:40:37 pm »
For my 6 month MRI and audiogram, I decided I wanted to go back to Stanford, so off we went Monday morning. That afternoon I had my hearing test, in which I learned that my word recognition is at 88% (it was 100% in February). I knew it had declined since my initial testing, and I feel that much or all of the reduction occurred before CK. I remember many moments in March and April in which I  became more aware of a hearing loss - mostly when conversation and ambient noise collided. Since CK, I think it’s stayed about the same, or, if it has reduced, it has not been much in the past 6 months. Either way, I was encouraged to get a hearing aid, so I’ll be working on that in short order.

Next was the MRI, about which I met with Dr. Chang and Dr. Hancock on Tuesday. My AN shows no change in size, and a good amount of necrosis in the middle. In many views it seemed 3/4 black. I understand this can change, and it is not indicative of future outcome, but it was nice to see. Both doctors felt things look good and that I was right on track (Dr. Chang said that necrosis is common), which is all we can ask for at this stage.

I asked about contrast next time, and it was explained to me that I can certainly elect not to have contrast, as my AN is large enough to be measured without. However, the doctors can’t see what is going on inside the AN without contrast. So, I plan on sticking with the contrast for now. I want to be able to observe what's happening inside this thing - I know it can evolve as time passes.

Another thing we talked about with the doctors was swelling. My AN has stayed the same size, however, Dr. Chang told me that if a patient has swelling (not everyone does), it generally occurs within the first 18 months. So that could still happen for me. He also mentioned that of those patients that do have swelling, many don’t even notice.

So that’s that. I am cautiously optimistic, and happy to be on track!

As far as current symptoms and such, things continue as they have been — I can work, exercise, and socialize pretty much as I have been. A couple adjustments for any hearing issues (such as keeping my good ear close to the conversation!) but by and large, it’s business as usual for me. And for that I am deeply grateful.

Here’s hoping that my journey to the next milestone in April continues much the same!
« Last Edit: October 17, 2018, 07:57:37 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

notaclone13

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Re: CyberKnife Journey at Stanford
« Reply #56 on: October 17, 2018, 11:25:58 pm »
Great news Jessica! Thanks for keeping us in the loop. Too often those with good outcomes drop off the forum, so updates are always appreciated. I hope things continue to go this course with lots of necrosis, no swelling and hopefully some tumor shrinkage very soon.

SP

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Re: CyberKnife Journey at Stanford
« Reply #57 on: October 18, 2018, 02:32:18 pm »
Great news Jessica!
I'm really glad you are tracking well... these frequent but necessary milestone checks can be stress inducing, but it sounds like your optimism prevails!! The hearing loss is a challenge to navigate but it's amazing how in our bodies and in our lives can make adjustments to navigate a positive path forward. a hearing aid can certainly assist -- another new path to navigate -- but well worth it!

be well,  from your friend south of the equator :)

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #58 on: October 19, 2018, 03:29:53 pm »
@notaclone13:
Thank you for the cheers! I truly hope things continue as you have said! This forum was such a help to me when first diagnosed and then while navigating treatment choices - I plan to pay it forward and update as I get carried along on this journey :).

@SP
Thank you so much, Stella! These check ups certainly are stressful - I surprised myself with how tense I became in the days leading up…and during. I barely ate!! Which is saying something, because usually nothing comes between me and a meal  ;D.  Thank you for the words about the hearing loss. It’s really nice to be reminded that it’ll all be fine in the end - even though I am optimistic, sometimes it’s hard work. Which is exactly why it’s lovely to read a reassuring message from my friend south of the equator  :) !

Hope you’re well! Sending you positive vibes from LA!
« Last Edit: October 19, 2018, 03:33:53 pm by Gtmochi »
Diagnosis 2/15/18, 2.5 cm right side AN, hearing 100%
CK at Stanford, 4/23-4/25/18, Dr. Chang and Dr. Hancock
6 month MRI: No change, central necrosis
1 year MRI: some shrinking and necrosis

Freelander

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Re: CyberKnife Journey at Stanford
« Reply #59 on: October 22, 2018, 08:35:51 am »
Hi,

I just wanted to add that your posts are helpful, especially for those of us that may need a radiologic intervention in the future.  And your positive outcomes thus far are encouraging.  Thank you for posting long after you have completed treatment.  My next MRI is next Monday and for the past 3.25 years they have been without contrast, due to the possible damage Gd can have on my kidneys.  During that time the AN has doubled (as of April 2018) though still considered relatively small (13mm).  Would you please explain what Dr. Chang meant that you can not see what is going on inside the AN without contrast?   My understanding of the reason for using Gd is to brighten the tumor so that it is easier to see.  My own observation is that is exactly what it does on the image.  On the other hand, there doesn't seem to be any built-in transparency on a Gd image to detect anything within the tumor.  What am I missing?