CyberKnife Journey at Stanford

[Gtmochi]

Well, here I am, two days post CK, and I'm not gonna lie...yesterday was interesting! The doctors cautioned me that the day after my last Decadron I might be blue. But I didn't believe them until I burst into tears at the vet's office (one of our dogs caught an eye infection of some kind while in Palo Alto).  Most of the day I felt disconnected, hurty, as if my eyes were on delay, that the skin/muscle on my head where the CK machine had been was rippling, and there was a little pressure or tightness that shifted and moved around my head. Also, I had some weird floaters in my vision. All very odd. Additionally, I gave myself a tension headache in addition to the actual headache that came later in the day.   I took some Tylenol, lay down, and felt better by bedtime.

I put in a call to the nurses at Stanford - the floaters were alarming - and it was communicated that that was something not as common and that if it does not go away to let them know. Today they are gone. Thank goodness! A good portion of my issues (the floaters and, a friend told me, the eye delay) were due to one or more of the drugs wearing off. I had been given Ativan prior to each treatment and  Decadron + Zofran after each treatment.

If you are reading this and considering CK, know this - I definitely rode a horse yesterday afternoon as well as took my dog to the vet first thing in the morning.  You can absolutely function the day after. Just probably not in total comfort, at 100%, or without feeling bizarre.

I have been an avid rider since I was 6 (42 now!). It gives me such joy, and I am loathe to let this AN get the better of me in that department. At the moment I am very lucky in that my balance issues are pretty much zero. Previous to treatment, I had a couple motion sickness moments, but they settled after taking a walk. I have convinced myself that riding has acted as a form of vestibular therapy (I ride about 5x a week) and has staved off further balance issues. As a result, I am determined to continue to ride as much as possible.

Today, my head no longer feels as if it were rippling, the headache has receded (I took 2 Tylenol this morning for a slight headache), and the delay/wonky feeling has abated. If I had to work today, I could probably manage to grit my way though it. But if you can give yourself time off, try to do it! I rode again today, and now plan to relax the afternoon away.

Oh! I forgot to mention - there has been a weird broken speaker thing going on in my AN ear. It makes my voice and some noises sound as if they are shorting out. Yet I can still hear when I put the phone on that side. That was not a thing previous to CK.

[notaclone13]

Hi Jessica,
Thanks for posting your update.   All this information is definitely good to know for those of us considering Cyberknife. Sounds like you had a kinda weird day yesterday. Happy to hear the weirdness was transitory. It's fantanstic that your balance issues have been minimal.   I agree with your thinking that riding has provided a form of vestibular therapy.  In my case it is taking a daily walk.  Sometimes I am a little off balance when I start, but it seems to get better as I go along. However if I overdo it, I end up feeling dizzy and have to sit down for a while. At any rate, keep posting to let us know how you are doing. With your determination and optimism I am sure you will do fine.
M.A.

[Gtmochi]

Now that I am 6 days post-CK, I can say so far, so good. After CK, I had all kinds of weird head and body feelings. The first couple days were probably the weirdest. Despite that, I have tried to keep moving. I rode again on Friday (two horses!). This time, I rode by myself - the Thursday after CK I had a seat lesson. This sort of lesson is done while the horse is on a lunge line (loooong rope), and you are riding walk, trot, canter in a circle around the person doing lunging. It’s a bit more controlled, focuses on balance, and was a good place for me to start. Friday, I rode and I was filled with such gratitude that I could still ride....oh how happy I was! I knew that in theory I would be fine, but it’s hard (for me, at least) to accept that. Though optimistic, I like to  be conservative in managing my own expectations. Well, I wasn’t 100%, did wake with a smallish headache, and I did need to rest that afternoon, but I felt better than Thursday and Friday it was off to the barn!

I have been tired (Thursday - Sat were the most pronounced) but not too bad. I wasn’t racing around as usual, but for sure mobile.

Saturday and Sunday I went to the gym and was so grateful to find I could still go on the elliptical and rower and hustle…let me qualify this. I dislike the gym. I do not stay more than 30-45 minutes total on the machines. I am not a beast! But I could do the levels I usually do, and was not wiped out after.

That’s been pretty much my experience thus far. I wake up, feel better than I did the day before, and plow ahead. When I say better than I did before, I don’t mean that my AN symptoms are gone - they are still there! But the new ones - the ones that kind of alarmed me - are pretty much gone, and I am left with what I started with. Which is a-ok by me.

I should mention that yesterday as I was driving back from the barn, my eye was twitching! I became worried and messaged the nurses at Stanford (they have this awesome app!) they got back to me quite fast and said that Dr. Chang said eye twitching as I described is not associated with ANs, and is most likely fatigue or stress. I slept hard last night and no twitching today. Also, though my tinnitus waned during and for several days after treatment, but my talkative friend is back! Still a low, manageable noise, but man, I had such high hopes! Also, my face tingling has really gone down. It was not too bad before, but now it’s often barely noticeable. I am waiting for that to come back, too. But so far so good!

Monday it was back to work, and I am happy to report that it was not a challenge due to CK. More because I am lazy after not working for over a week! I got used to being a lady of leisure  .

M.A.: You are so right about exercise. Though I am very early in this process, walking, riding, biking, swimming or whatever activity you love, if you are able, keeping at it is a good thing. I hope you are right about my determination and optimism!

[gary.s]

Nice to hear that you are doing well Gtmochi. It sounds like you have been very active and not allowing the effects of CK to stop you. That is wonderful, just gotta keep moving forward. I am glad that even though you are a distance from Stanford, they are responding when you need them. Especially when an unexpected symptom shows up and you become worried. It is so easy to freak out right now. I have been trying not to panic, forcing myself to wait a day or so to see if a symptom settles down and they usually do. Panic and anxiety seem to exasperate things, and that does not help matters. Have to find ways to relax so we can remain calm through this CK adventure. Riding horses sounds like a perfect way to take your mind off of things. Take care and continue feeling better. Your fellow CK traveler,

Gary

[Gtmochi]

Hi Gary,

I have been trying to be active - mostly I just try to ignore what I am feeling and plow ahead  . Hopefully that will be enough in the coming year. It is SO easy to freak out over every little thing. Funny that you gave yourself a wait and see policy - I instituted one of those on myself the other day! As symptoms evolve and devolve, I tend to freak out too.  It's easier said than done, but since the other day I have been trying not to obsess over every change by redirecting my nervous energy elsewhere. Like work or writing, or cleaning or baking (I made amazing blueberry muffins last night!) or sharing too much on the ANA forum  .

You take care as well and keep feeling better!
Happy trails!

Jessica

[SP]

Hi  Gtmochi,

I know the relief of having the treatment finally done...its a roller-coaster of decision making and emotions for sure! It also gets a bit stressful for me when "new" symptoms come up; its a good idea to distract yourself if you can. I also had the advice to think of the intermittent symptoms as the CK doing its thing to treat and halt growth... keep up the positive thinking and activities and best of luck ...cooking is always a good idea .

Kind regards

Stella

[Gtmochi]

Hi Stella,

Oh! Your advice is so on point! You are right - I should try to think of the intermittent symptoms as as the CK doing its thing.  Thank you SO much!

Jessica

[gary.s]

Hi Gtmochi,

New symptoms can definitely rattle you and cause lots of anxiety. We just have to learn to ride them out, knowing that most of them will go away soon after they appear. This is going to be a long journey, with a very fast learning curve. I like what SP says, that the symptoms indicate the CK is doing its thing. Got to be strong Gtmochi.

Gary

[Gtmochi]

Well, a little over 2 weeks post CK and all seems to be status quo! Gary is right (thank you for reminding me to keep calm and carry on, Gary!) when he says the symptoms can rattle you and that you just have to ride them out. When I think about it, the symptoms are pretty much those I had before. Just now they have more significance since I've had CK. So really, as everyone who has ever had CK has said before me, the problem is trying not  to trip yourself out.

I chatted with a physical therapist friend of mine, and described that weird motion sickness feeling I sometimes experience.  She told me that is actually disequilibrium...or dizziness. HA! So all this time I thought I had experienced no dizziness, but I was totally wrong. Anyway, I had a couple spells of that before CK  (they never seemed to last too long and always were remedied by going outside for a walk) and I've had a couple since. They seem to happen a little more often. But again, that's possibly because I am aware now. They aways seem to come when I am still and thinking, such as in the evening. After I was diagnosed, I suddenly had face tingling, motion sickness...I was on alert all the time for any symptoms! I believe this is happening now. So I sort of try and pretend I don't have a 2.5 cm AN lurking in my head and that seems to work most of the time  . 


Physically, I am riding, going to the gym, baking like a fool, and working just as before CK and before diagnosis. I dislike even saying that though, because I don't want to jinx myself! Unless things change, I'll report back in a few weeks time.  Also, there's no hair loss outside of the norm, either. Although to be honest I have a lot of hair and it's long. It's difficult for me to tell if I am shedding more than usual  .

One more thing -- I feel I should share any supplements I am taking. Though I've no proof they are helping, I do feel good! Here they are:

Green Vibrance (it has Sulforaphane, which miiight inhibit ANs: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5090244/ ). If nothing else it has loads of probiotics.
1 baby aspirin a day because hey -- that has some AN inhibiting studies, too.
CDB tincture at dinner for a restful sleep -- and it has been used to help the brain recover after traumatic brain injuries. So maybe it will help me, too  .
A daily multivitamin.

[gary.s]

Hi Gtmochi,

Sounds like you are doing fine Jessica. I have also been waiting for the bald spots to appear, but my radiologist said it does not happen to everyone. If it does happen, I am sure long hair will conceal it pretty well. It does grow back, so no real worries. Nice to hear that you are being so active and doing all the things you did prior to CK. It is important to resume our lives to the best we can. Hope the coming week is a good one for you.

Gary

[Freelander]

Gtmochi,

Thank you for sharing your 'blow by blow' commentary of CK treatment at Stanford, the explanations were in the right proportions and serve as a great help in prepping anyone deciding to take the treatment.  You are an AN warrior! 
I am a latecomer to this thread, yet, a multi year watch and waiter, a time in which I too have consulted with a number of specialists, including the folks at Stanford CK.   

I second all the positive comments on your fortitude and management of your symptoms, and was highly impressed with your commitment to riding horses.   I am similarly connected, though to a road bike, which helps define/improve? my quality of life.   

I do have a question regarding the impressive amount of homework you did beforehand: did you visit anyone who specialized in, or investigate, the use of proton therapy to treat ANs?   

Hoping each day brings you closer to the best of outcomes.

[SP]

Hi Jessica,

your posts are truly inspiring...thanks for the reminders to keep on keeping strong... and for your neat summary on the supplements, very interesting to me.

best of luck on the continued healing journey,

Stella

[Gtmochi]

Gosh! That's what I get for not turning post notifications on – I missed all your messages!

Gary, thank you for the reassurances about hair loss! I hope it doesn't happen to either of us, but you are right -- it will grow back. Hope you are doing well and that your post-CK journey continues smoothly!

Freelander, Thank you for your well-wishes! I am glad my account CK at Stanford wasn't too crazy – I get a little over-share-y. I can't remember if I said this about Stanford or not, but that place is run so well. I rarely waited for any appointments, you could check in using the Stanford app. After, when I have contacted the nurses, they responded so quickly! One of Dr. Hancock's nurses also contacted me a little over a week after CK to check on me.

I bet road biking DOES define and improve your quality of life as horses do for me.  Being without horses would be really, really tough. Throughout all my rough patches (including a bad spiral finger break that ended up causing 3 surgeries, closing a business, etc), I've always kept riding and horses constant. I really believe that it has helped me keep moving forward, and in this case been an immeasurable help in keeping my balance mentally and physically.  I am hoping this time is no different – and that road biking continues to do, and does do the same for you if someday you are no longer watching and waiting.

 As far as proton therapy, I hadn't really come across it much in my research. Although admittedly I was so honed in on CyberKnife, Gamma Knife or surgery that I didn't have enough bandwidth for proton therapy. Then, when I started speaking with doctors, many sort of dismissed Proton Therapy as a treatment for ANs or didn't mention it at all (and I never asked because the bandwidth problem). But I have to say, my gut response is that it was dismissed because it's a new-for-AN treatment.  Wishing you uneventful watching and waiting!

SP, I am glad my supplements were interesting to you, and thank you for your well wishes! Your posts helped  me so much before CK and after, as well. Previous to treatment, I would lurk about on this forum, reading everyone's experiences, trying to wrap my head around my AN. Your story was an affirmation and an inspiration. How brave to come to CA all the way from AU!  I hope you're healing journey continues to be smooth!

[SP]

Hi Jessica,

thank you so much for your kind acknowledgment --I am so glad that my story was in any way helpful to you and the tough journey of navigating an AN and treatment options. I had many, many, people from this forum to help me with my journey too. I read all their posts and reached out via PM, Skype and phone calls... talk about a research project... I've had a few up and downs; and I know the anxiety increases around my yearly MRI check up .. it's coming up in August...I'll post a year 3 update then.

speedy healing to you:)

Stella

[Freelander]

Gtmochi,

Thanks for responding and the kind words.  I read about your supplements, I have been taking a full aspirin a day for several years now and uncertain if it has had any slowing effects as the tumor has still grown.    On the other hand I am intrigued about the potential of another drug that shows real promise to arrest tumor growth, based on studies done thus far:
https://www.masseyeandear.org/news/press-releases/2018/04/mifepristone-may-halt-growth-of-intracranial-tumor-that-causes-hearing-loss  I have an appointment with the lead doctor early next month to find out more, and whether I, a male, would be a candidate if a clinical trial is in the not too distant future.   

The doctors I saw at Stanford are the same that SP had for treatment.  I didn't have a chance to meet Dr. Hancock and had heard about him via another doc in NYC.   I did meet with Drs. Soltys and Chang.   You are right about the Stanford Health campus, very impressive, and it is reassuring to hear favorable impressions about the doctors and nurses during a very challenging time in one's life. 

I'm also still exploring the possibility of proton therapy, and while historically not used much for AN, a relatively new pencil beam version has shown promising results.   It is especially attractive in that the full treatment dose stops at the target and does not pass through healthy tissue and cells as other radiation does as it leaves the body.  However, it is puzzling that it needs 25 treatments.  I think the CK uses three treatments, after setup, at least according to that Dr. Chang said.

Good health and happy trails!