Author Topic: My Cyber Knife Adventure  (Read 13912 times)

gary.s

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My Cyber Knife Adventure
« on: April 16, 2018, 09:31:41 am »
In a couple of hours I begin my first of five sessions of Cyber Knife. I will start my story from the beginning of when things started to go wrong.

We had a family trip in the mountains of Colorado about four years ago. I thought the elevation change was causing my right ear to feel full of pressure and my hearing muffled. When we got back down to sea level, the symptoms did not clear. Once back in Arizona, I saw an ENT to evaluate my symptoms. I was given antibiotics, nasal sprays and told that my allergies were causing the problems. I also started eating raw honey to help with the local desert allergies. I tried various homeopathic remedies and still nothing worked. I was of course concerned and frustrated.

I essentially suffered with a loss of hearing and balance issues until January of 2017, when I decided to see another ENT. My hearing test indicated a possible tumor, and the MRI verified that an acoustic neuroma was present on the right side of my brain. The tumor measured 1.59 cm x 1.40 cm. I was referred to a neurosurgeon at Barrow Neurological Institute in Phoenix, and I decided to  Watch and Wait with the approval of my doctor. My next MRI in April of 2017 showed no growth of the tumor. I took another MRI in September of 2017 and still no growth. Over the next six months I started having some facial numbness and a loss of taste on the right side of my tongue. I took my next MRI on March 5, 2018, and the tumor grew to 2.07 cm x 1.70 cm. My neurologist told me that growth of these AN's can occur at anytime. They can remain essentially dormant for long periods of time, even years, and then take off growing again. It is impossible to know how long my AN was stable with no growth prior to my latest MRI.

In a couple of hours I begin my five day adventure with the Cyber Knife machine. I will continue posting as the days go on.

« Last Edit: April 16, 2018, 10:01:49 am by gary.s »
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: My Cyber Knife Adventure
« Reply #1 on: April 16, 2018, 09:38:27 am »
Wishing you smooth sailing today and from this point onward.

gary.s

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Re: My Cyber Knife Adventure
« Reply #2 on: April 16, 2018, 10:03:51 am »
Thanks notaclone 13,

You have been hanging in there with me. I appreciate it.
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: My Cyber Knife Adventure
« Reply #3 on: April 16, 2018, 02:13:22 pm »
Good luck! Wishing you the very best in your treatment  :).
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: My Cyber Knife Adventure
« Reply #4 on: April 16, 2018, 03:50:29 pm »
Just got home after my first cyber knife treatment and it was really quite easy. I was given a 1 mg lorazepam tablet to keep me calm under the mask, since I am quite claustrophobic. All of the doctors arrived, neurologist, radiation oncologist, otolaryngologist, and the physicist. It took them about 15 minutes to check everything out and then the machine started. It went all around my head, finding areas it can penetrate so as to hit the tumor without damaging other tissue. The actual cyber knife radiosurgery took a total of 26 minutes. I felt nothing and things seem quite normal. I do have a slight headache, but that could be from the lorazepam mixed with my own stress. They played music in the room and that was nice. One day at a time.

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

Carolgre

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Re: My Cyber Knife Adventure
« Reply #5 on: April 17, 2018, 08:34:44 am »
I also developed a slight headache after my third radiation session. My oncologist recommended Advil to reduce inflammation, which worked beautifully. He said if that didn't work, I might have had to be put on steroids, which I definitely did not want. I'm glad your first session went well. The hardest part is to lie absolutely still with that mask on but I found it fascinating to watch the Cyberknife "arm" move around my head and marveled at the advances in medical technology that makes radiotherapy an option for many of us.

gary.s

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Re: My Cyber Knife Adventure
« Reply #6 on: April 17, 2018, 03:51:38 pm »
I had my second session of Cyber Knife this morning and it lasted about 40 minutes. I watched the machine go around my head for a while then fell asleep. It will be the same pattern each day, so nothing new to see. Last night I began to feel pressure behind my AN ear and that caused headaches. Woke up this morning with the same feeling. Tylenol did nothing, nurse told me to take Advil. That is helping. I am also getting the sound of a chime in my AN ear since beginning CK. Have to see if that continues. Other than the mask holding down my head and the need to stay still and quiet, it is pretty easy stuff. I will see what tomorrow brings.

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: My Cyber Knife Adventure
« Reply #7 on: April 17, 2018, 04:12:41 pm »
Hi Gary, that makes it 2 down, 3 to go.  Sorry to hear about the headache, but it appears to be a frequent occurence after radiosurgery. Does one advil do the trick, or do you have to take a couple?  Nice that you could catch a few zzzs during the process. Beats claustrophobia that's for sure. Thanks for posting each day. Let us know how tonight and tomorrow go.

M.A.

gary.s

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Re: My Cyber Knife Adventure
« Reply #8 on: April 18, 2018, 09:10:53 am »
Had a pretty good sleep last night, only took one advil yesterday to make it through the day and night. A little bit of pressure this morning at the AN location and some pain at the base of my tongue. Another advil should help. i will ask about the tongue issue when I go in for my next treatment this morning. I have had chirping in my AN ear since the first Cyber Knife session, sounds like I have a little bird living in my head. Have to get ready for my next session.

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

gary.s

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Re: My Cyber Knife Adventure
« Reply #9 on: April 18, 2018, 03:18:06 pm »
Third session of cyber knife is over today. Two more sessions left and it will be over. Another 26 minutes radiation, but spent a total of about 40 minutes under the mask. The doctors have to check the computers and give final okay before the machine starts. Mask is tight on my nose and chin and that is why my tongue has been hurting. I am grinding my teeth and attempting to move my mouth and that is causing muscle strain.

I am off kilter a little when walking, headaches taken care of with advil and tired. All else okay, although my brains do feel spaced out to say the least. No problem eating anything and everything. Stay strong.

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

gary.s

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Re: My Cyber Knife Adventure
« Reply #10 on: April 19, 2018, 01:46:38 pm »
My fourth session is completed and the radiation is finally catching up to me. Feeling tired and kinda funky in the head. Almost feels like a bad hangover. No real headaches today, just some pressure behind my right ear where the tumor is. Sleeping a lot, which is nice and makes the time go by faster. I cannot sleep on my right side with the AN on the pillow because that causes pain and pressure. So I have to sleep either on my back or on my left side. Other than being spaced out, I am really doing okay. One more session tomorrow and my wife and I can clear out of this hotel and drive home. Looking forward to going home and resting in my own bed.
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: My Cyber Knife Adventure
« Reply #11 on: April 19, 2018, 02:54:06 pm »
Hi Gary! I am so glad things are going well. I'm sorry you got a bit of a headache and have some pressure, but I am sure that will fade once you get home and have a nice rest in your own house. I've been reading your updates and thinking good thoughts for you   :).  Here's to another successful treatment tomorrow!

I start mine on Monday, and had a whirlwind of appointments with Dr. Chang and Dr. Hancock and then picked up medication - I get a rash when they use the contrast for MRI, so they put me on Prednisone and Benadryl in preparation for the MRI. I also got a CT scan! A first for me. They gave me 1 gram of  lorazepam for the CT scan, simulation and MRI. It worked a treat as far as feeling claustrophobic and nervous!  So thank you for the tip!

I guess maybe I should create a treatment journal too - I found that of others so helpful in figuring out what to do  ;D Wishing you a continued smooth journey!
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: My Cyber Knife Adventure
« Reply #12 on: April 19, 2018, 05:28:57 pm »
Hi Gary,
One more treatment and you are over the big hurdle.  Hope things go well tomorrow and that by evening you are safely home and resting in your own bed.  Sorry about the discomfort you are having on the AN side. Wondering if they will send you home with medications to combat pain and swelling should it occur.  Many have mentioned getting steroids. By tomorrow evening you will officially be a "postie toastie" as they say on the forum. We very much appreciate you sharing your journey with us.  Many of us will be following in your footsteps sooner or later.

Hi Gtmochi,
Sounds like they are taking good care of you at Stanford.  It is fortunate that you live in California, an oasis of excellent AN treatment.  Have you completed both CT scan and MRI?  Have they made your mask yet? If so, you have the week-end off to relax and enjoy yourself.    Hope things go smoothly on Monday. Did either doctor mention how many Gys you will receive?  How is your hearing at this point?  Is it still in the normal range?  Please keep us in the loop so we can share your CK experience. 

Gtmochi

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Re: My Cyber Knife Adventure
« Reply #13 on: April 19, 2018, 08:37:47 pm »
Hi Gary!

I forgot to say very best luck on your treatment tomorrow. It sounds like its taking a toll, but with lots of rest at home you'll be yourself again. The stress of everything plus the actual treatment is a double whammy. Happy trails and best wishes tomorrow!

Hi Notaclone13

They are taking good care of me and I certainly am lucky to be in AN-land as well as Lalaland! I completed my CT Scan and MRI, and they made my mask. I think Dr. Hancock said my treatment would be for 18gy - I will double check! My hearing is pretty good - very mild loss there. Here's hoping I still retain some after all of this. I started a little journal of my own here on the forum - reading others' stories has made such a difference for me, I felt it was right to pay it forward  :).
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: My Cyber Knife Adventure
« Reply #14 on: April 20, 2018, 04:14:30 pm »
Just finished my fifth and final Cyber Knife session at Barrow Neurological Institute in Phoenix, AZ. Medical staff was wonderful to me, very sensitive to my needs and concerns, and always asking me how I was doing. My final treatment lasted about 25 minutes and I was done. Decided not to keep my mask, I have a toasted tumor as a reminder of this entire experience. Kinda weird going through this and then they send you on your way. Other than a headache that Advil takes care of and a little foggy in the head, I am feeling quite normal. The nurse did tell me that the effects of the radiation will catch up to me in a few days and I will begin to feel more tired. Time to rest now, it has been a long 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