Author Topic: CyberKnife Journey at Stanford  (Read 15183 times)

Gtmochi

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CyberKnife Journey at Stanford
« on: April 19, 2018, 03:45:11 pm »
Hello!

Reading the journey of others within this forum was extremely helpful as I was navigating the dark, deep waters of Acoustic Neuoma World. I am not generally a sharer, but feel it is so important to document for others who may find themselves in my shoes.

But before I do, whoever you are, you WILL be ok. Things seem so bleak and scary at first. You don't know which way to turn. But in the end, you will be ok.

The image of trying to get a difficult horse on a trailer always comes to mind. The horse is scared, he/she wants to run away, but we are behind them urging them forward. The horse tries to duck to the side, but again, we are there. The horse MUST get on the trailer. Sometimes getting them on takes time, but eventually, they settle and go. Until this very moment, I felt like that sad, scared, desperate horse. With my size AN, watch and wait was not a long term solution. I had to get on the surgery trailer or the radiation trailer. I wanted nothing to do with any of it.  I just wanted to run screaming.

But I can say with certainty that once you find the treatment that both your heart and head are ok with, move forward, and you will settle a bit. Just like horses do. Before long, most of them are munching hay and calm as we drive along.


Anyway, here goes:

Symptoms that led to diagnosis - tinnitus, full ear. Was ordered an audio gram and MRI. Slight hearing loss on the right.
Diagnosed with a 2.5 x 2.2 x 1.8 AN on my right side February 16, 2018
Chaos and despair ensued
Research soon followed - I scoured forums, Acoustic Neuroma FB pages, medical papers.


From the beginning, Surgery terrified me so much that weeping occurred when I met with every doctor, or even discussed it with family.

I met and spoke with LOTS of doctors: Dr. Slattery and Dr. Lekovik of House Clinic, Dr. Giannatta at USC, Dr. Yang at UCLA,  Dr. Fineman out of Pasadena - he's super  (I live in LA). I sent MRIs and chatted with  Dr. Freidman and Dr. Schwartz at UCSD, Dr. Cunningham at Duke, Dr. Chang at Stanford, and Dr. Sheehan of UVA. All great, kind, AN-experienced doctors!

I received a variety of opinions ranging from either surgery or radiation - dealer's choice, surgery but you are candidate for radiation, or surgery. I was never told surgery was my only option. Those that suggested surgery (but also said I was candidate for radiation) often cited the reasons against radiation as my age, and the tumor size.

This is when treatment choice becomes exceedingly personal. For me, I am not worried about the potential for a malignancy 20 or 30 years down the road. I am 42. Medical advances will occur during that time and with luck all will be well.  Also, the chance of malignancy of my actual tumor is SO low - all signs point to it being a typical AN, so I am going with that. I know for others this is terrifying, and I totally respect that, because I feel the same way about complications or issues regarding surgery.

Dr. Chang at Stanford gave a truly unbiased presentation. Only 2 or maybe 3 other doctors did this, and I had determined that whoever was going to help me, it had to be someone who had a deep comfort level with both procedures, and didn't push me either way.  I considered staying in LA to work with one of those doctors, but Stanford and Dr. Chang/Dr. Hancock do so many ANs with CyberKnife...I felt strongly it was worth the trouble and expense to travel.  Dr. Chang does a lot of surgery, as well as radiation. He said my tumor was amenable to either. The success rate for tumors my size at Stanford, Dr. Chang told me, was about 93%. He defines success as stopping tumor growth without further intervention. He then went on to say that after that, his top priority is preserving facial nerve, balance, and then hearing. Music to my ears. I hope to be one of the lucky who retains hearing, but my biggest priority is stopping the dang thing.

There are of course, drawbacks to CyberKnife, as there are to surgery. But my heart and head said --- CyberKnife at Stanford. So that's what I did. Waiting for the dates to arrive was hard. But here I am at last. In Stanford as I type. And it has been a great experience. Check in, seeing the doctors, getting blood work, simulation, CT scan, MRI - it is all very efficient and organized. Everyone is kind and on time. The facilities are lovely. 

We drove up 4/18, met with Dr. Chang and Dr. Hancock
I also had blood work done to check for pregnancy (nope) and kidney function.
4/19 I had my CT scan (for which I took a course of Prednisone and Benadryl for a suspected reaction to Gadolinium). It for sure helped. I don't have a rash. During the CT scan they made me my mask, which looks like a luchador's. Then I had my MRI and was released into the wilds of Palo Alto while I wait for treatment to begin on 4/23. Treatment will be 3 days for 45 minutes. Because of the size of my AN, I will be given Decadron during that time for swelling. I dislike steroids with a passion. I am told this one leaves some folks euphoric, and then once treatment is over they are gloomy the day after because of withdrawal. But it goes away! In any event, it is what it is. Dr. Hancock said he may also give me something for nausea, as my AN is cozy with my brain stem - sometimes the need to get sick is activated (I guess the nerves or whatever that trigger it are right there). Additionally I will take the Ativan to chill me out. That is a lot of drugs, and I don't relish taking them.  But it is only for a short while during treatment (heaven willing), and must be done. 

So that's that!

We are staying at a LOVELY Air BNB in Menlo Park. It's peaceful, quiet, and allowed both our dogs to come. I wanted them around for comfort. I highly recommend this place - super quiet, lovely, clean, private and updated.

So far we have eaten at Palo Alto Creamery (so, so good), Sultana (take out - Greek - YUM). Today we went to the Ace of Sandwiches fo lunch. Also delicious. This area - Palo Alto - is STUNNING and reminds me of the green hills of Maryland, where I am from originally.

I'll post more as things move forward :)

Wishing everyone on this journey the best!













« Last Edit: April 27, 2018, 03:29:51 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 #1 on: April 19, 2018, 10:24:51 pm »
Best of luck next week Gtmochi. You will be fine, just have to go through a wild horseback ride. Just relax and the ride will be over before you know it. Be well.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

SP

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Re: CyberKnife Journey at Stanford
« Reply #2 on: April 22, 2018, 04:19:12 pm »
Wishing you the the very best !! you are in good hands.

Kind regards,

Stella
2.9 cm Left AN (Mar 2019)
2.9 cm Left AN (Aug 2018)
3.1 cm Left AN (Aug 2017)
3.2 cm Left AN (Aug 2016)
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

gary.s

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Re: CyberKnife Journey at Stanford
« Reply #3 on: April 22, 2018, 05:39:30 pm »
Good luck tomorrow Gtmochi. Be strong and everything will turn out okay.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

notaclone13

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Re: CyberKnife Journey at Stanford
« Reply #4 on: April 22, 2018, 06:28:27 pm »
Our thoughts will be with you tomorrow.  Hoping all will go smoothly and will be over with before you know it.

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #5 on: April 22, 2018, 10:12:52 pm »
Hi Gary, Notaclone13 and SP! Thank you so much for your kind support. It really means a lot and I am grateful. :)
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 #6 on: April 23, 2018, 03:17:31 pm »
Hi everyone,

This morning was my first CyberKnife treatment. I was so scared - not so much of the machine or what was happening today, but more a sort of fear of what lies ahead in the months to come. I wish there were an algorithm to determine which patients encounter rough patches and which sail through! Still, not once did I doubt my choice! In any case,the nurse, radiation guy and Dr. Hancock were super kind, and the treatment itself uneventful despite the significance I had given it in my mind.  Right now I’m feeling a little out of it (thanks, Ativan!) but otherwise fine. Randomly, my tinnitus is lower than before, which is interesting. Also, the docs gave me Decadron (steroids) and Zophran (sp) for the nausea that may or may not happen and we’ll never know if it does because Zophran  ;D . Other than that, I feel pretty fine. Hope it’s a trend over my next 2 treatments!

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 #7 on: April 23, 2018, 05:09:18 pm »
Hi Grmochi,

Glad it went smoothly today.  I know how nervous you must be about the coming months and it's totoally understandable. We are all in the same boat.   Good to hear the ativan helped with the anxiety. Could be that it is also helping the tinnitus.  I have read that benzodiazopines (such as ativan) help with tinnitus. Zofran is also a wonder drug.  Thanks for posting and letting us travel along your journey with you. We will stay tuned for tomorrow's update.

M.A.

gary.s

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Re: CyberKnife Journey at Stanford
« Reply #8 on: April 23, 2018, 06:32:19 pm »
Hello Gtmochi,

Good to hear that you are okay today. Things will turn out fine, just have to do the CK thing this week and then you can rest. I found that all the anxiety I had as the week of CK came and went really exhausted me. It has really taken a few days to start mellowing out. I am glad the Ativan is helping calm you so that you can go through this without too much anxiety. Take care this week.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #9 on: April 23, 2018, 07:07:25 pm »
Hi Notaclone13,

I did not know that about Ativan! Now I am trying to remember if it helped when I had my MRI and CT  scan on Thursday. I am pretty squirrelly in closed-in spaces or when my head is locked down, so I like to avail myself of whatever is available in those situations! I will try and note if the tinnitus is still improved tomorrow before I take Ativan again. Also, my pleasure sharing my AN adventure - like you I found (and continue to find) the information shared on this forum invaluable. I feel it’s important to pay it forward!

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 #10 on: April 23, 2018, 07:13:02 pm »
Hi Gary,

So far, so good! It really helped to hear how things were going for you!  I think you are right - anxiety and stress have been taking such a toll.  It’s hard to parse whether I am feeling a little out of gas  because of treatment, the medication I’ve taken, or plain old stress! I am loooking forward to when this is behind me and I can get back on the horse :). Hope your own recovery continues being a good one and you are feeling aces in no time!

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 #11 on: April 24, 2018, 05:37:31 pm »
Hi everyone!

Day two of CK at Stanford went just like the 1st - except no crying on my part ::) . Like the first, this session was 35 minutes. Wally (the CK machine’s name) prowled around my head working his magic. Truly this process is one or two steps removed from that. They give you Ativan, you lay on the platform,  the mask is applied, and the machine does its thing as you lay still and placid as a sun bathing cat.


Today felt much the same as yesterday - I paid close attention to different sensations while Wally did his work, but I’d be pressed to say I felt a thing. Maybe some more fullness or heat occasionaly? Could be my Ativan addled mind  :). In any case, I was up and out and visiting the Apple Campus (very cool augmented reality display and yummy hot chocolate). Now I sit in our Air BnB’s garden, reading.

I feel a bit out of it - somewhere between dazed and lazy, but it’s hard to say if that’s the treatment or the drugs. The decadron for sure would not let me sleep last night. Every time I’d be about to tip into dreamland my mind would stop me from falling. Very frustrating. That too could also the culprit behind feeling out of sorts.

Anyway, so far, so good. Tomorrow is my last treatment. Afterward, we head back to LA.
« Last Edit: April 24, 2018, 06:59:52 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 #12 on: April 24, 2018, 06:00:52 pm »
Hi Gtmochi,

I am sure you are feeling dazed and out of it, pretty exhausting week for you. It is almost over, then you can go home and rest. I did not know that Stanford was doing three days in a row, thought it might be MWF instead. This way you get it over with real fast. My five sessions just prolonged the exhaustion, you are almost home free. Try to get some sleep and hang in there. Looking forward to hearing how you are doing when you get back home. Be well.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018, Barrow Neurological Institute
9/2018 hearing aid Phonak Audeo B and Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm, mild necrosis
MRI 5/16/2019 No change in AN size, necrosis

notaclone13

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Re: CyberKnife Journey at Stanford
« Reply #13 on: April 24, 2018, 06:34:07 pm »
Hi Jessica,
You've made it to third base, and after one more hit you're headed back to home in LA with a toasted, shrinking AN.  Hopefully once you are minus the decadron you can get a good night's rest.  Maybe they could give you a couple of ativans to take home.  That would certainly help you sleep, or at least relax.  By the week-end you should feel back to normal and ready to get on with life as usual. Don't forget to pamper yourself for a few days, you deserve it.  I admire you for making your decision and jumping in head first (literally).  Looking forward to hearing from you tomorrow.

Best,
M.A.             

Gtmochi

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Re: CyberKnife Journey at Stanford
« Reply #14 on: April 25, 2018, 01:00:16 pm »
Hi everyone!

Day three of CyberKnife is over, and everything went smoothly! Afterward, I met with Dr. Chang and Dr. Hancock, who both went over who to contact regarding symptom fluctuation and what to expect in the coming weeks and months. They were extremely nice!

I woke up this morning with a little fullness on my AN side, which they told me was common. Other than that, I haven’t felt much different. However, I will say my hearing has a bit of a broken speaker sound sometimes - it depends on the loudness and tone, I guess. Probably this is my hearing maybe going though something. With luck that weirdness stops, but I know there are no guarantees regarding hearing. As long as the AN is ultimately stops dead in its tracks I am happy.

I took a Benadryl before bed last night, which blessedly blocked the Decadron from keeping me awake, so I woke up feeling more myself. I am so glad this bit is over. Now I am interested in how I’ll feel without   Decadron tomorrow.    They did not give me any drugs to take home, but I’ve got my CBD oil!


Thank you, Gary and Notaclone13 for your support and well wishes! It means so much. I felt I had to dive in (ha!) head first. Something inside me told me NOW. So I listened :).


Now we’re off to head back to LA! Wishing everyone health!

Jessica
« Last Edit: April 25, 2018, 02:50:59 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

 


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