Author Topic: My CyberKnife/AN Journey Begins  (Read 3624 times)

dalemccl

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My CyberKnife/AN Journey Begins
« on: April 12, 2017, 08:39:05 pm »
Hello,  I have previously posted a few questions here, leading up to my decision to have CyberKnife treatments for a right-side AN. The first of my 5 treatments is tomorrow, April 13, 2017.  They start on a Thursday, skip the weekend, and end next Wednesday  (Th-F-M-Tue-W).   I found it helpful to read the posts here where people posted updates as they went through their AN journey, so I thought I would post an on-going thread as I progress through the treatments and the months afterwards.  Hopefully it will be helpful to someone at some point in the future, just as the posts of others have been helpful to me.

First the background.

I experienced sudden, unexplained hearing loss in my right ear about 3 years ago (can't remember exactly when).  I called my ENT group for an appointment but the ENT doctor I have seen in the past for allergies and sinus infections, and whom I like and trust, was booked up, so I was given an appointment with the first available doctor. That ENT told me the loss was caused by a virus and would be permanent - nothing can be done about it.  He gave me a prescription for prednisone but said it probably wouldn't help.  (He was right about that. It didn't help. So I accepted the hearing loss and life went on.) 

About a year or year-and-a-half later, in September 2015, I saw my regular ENT doctor for something unrelated, and during the visit he studied my chart and history, and kept saying "very interesting".  I asked him what was interesting and he said "I don't think your hearing loss was caused by a virus.  I think it may be neurological.  We need to get an MRI."  I got the MRI in October, 2015, and shortly afterwards he called me to tell me I have an acoustic neuroma on the right side.  He explained a little about it, but said he is not a expert in these tumors and was referring me to a local neurotologist who is.
 
I met with the neurotologist later in the month. He told me the tumor was 16 mm x 9 mm, which would be near the low end of medium-sized.  My only symptoms were hearing loss in the right ear of about 75% (based on their tests), and very mild tinnitus in that ear.  (The left ear hearing is not 100% but is very serviceable.)  We decided on watch and wait, and a followup MRI in 3 months.

The 3-month MRI was done in January 2016 and showed the tumor was now 15 mm x 6.7 mm, compared to 16 mm x 9 mm three months earlier. The neurotologist said that was probably just a measurement difference between the two radiologists who evaluated the two MRI's.  He didn't think it actually shrunk.  But it was encouraging that it didn't grow.  We decided on further watch and wait.  He scheduled another MRI for one year later (January 2017.)
 
I had that MRI in January 2017 and met with the neurotologist in February.  He told me the new MRI showed the tumor was now 19 mm x 10 mm. A new hearing test showed a further loss of hearing in the right ear - now at about 90%.  After some discussion, we decided on CyberKnife at Parkview Hospital in Fort Wayne, IN, which is where I live.  I prefer to avoid surgery if possible, and my age (71 but quite healthy) may not be ideal for surgery.  I met with a Radiation Oncologist at the Parkview CyberKnife center in early March and they scheduled the 5-fraction procedure for April.

I had the mask fitting, CT Scan, and MRI two days ago.  This latest MRI shows the tumor is now 20 mm x 13 mm, which is quite an increase in just 3 months.  I have 5 Decadron tablets.  I am to take one tablet 1-hour before each of the 5 treatments. Nothing was mentioned about anti-nausea pills that many here mention that they got after each treatment.  My pre-treatment symptoms are 90% hearing loss and very mild tinnitus on the right side. No noticeable balance or facial problems.

To summarize the tumor growth pattern:
October 2015:   16mm x 9 mm
January 2016:   15mm x 6.7 mm
January 2017:   19 mm x 10 mm
April 2017:        20 mm x 13 mm

I will post updates during the treatments, and thereafter will post when something significant occurs, but will also check-in with occasional updates even if nothing significant happens.   
« Last Edit: April 13, 2017, 05:12:51 pm by dalemccl »
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

Patti

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Re: My CyberKnife - AN Journey Begins
« Reply #1 on: April 13, 2017, 07:00:20 am »
Thanks for posting!  Please keep us updated!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #2 on: April 13, 2017, 06:30:04 pm »
I completed the first of 5 CK treatments about 6 hours ago.  I took a 4 mg Decadron pill one hour before the procedure starting time.   No nausea pill was provided after the treatment as it was for some others who post here.   I felt perfectly normal after the treatment, and still do.  I suspect if there are going to be any short-term side-effects from the radiation, such as fatigue or nausea, they won't will show up until after receiving the cumulative dose of radiation from all 5 treatments, or shortly thereafter. 

After the treatment ended, I asked the monitoring CyberKnife technician how long the treatment lasted.  She said 30 minutes, which was shorter than I was expecting.  At my first consultation I had asked the radiation oncologist how long he thought each treatment would take.  He said he won't know for sure until they do the final scans and the treatment plan, but probably about 45 minutes.  I assume he based that estimate on the then current tumor size, which was 19mm x 10mm.  Since that time, the tumor grew a little to 20mm x 13mm, as shown on the MRI done 3 days ago for treatment planning purposes.   So I was surprised it took 33% less time than what he originally estimated.  Pleasantly surprised for sure, but it makes me wonder if they made a mistake during the planning and it won't be enough radiation to kill the tumor.  (That's probably just my typical worst-case scenario thinking when it comes to medical problems.) 

Some posters here list their tumor size with 3 dimensions.  None of the radiologist's reports for my 4 MRI's list a 3rd dimension, just two.  Two dimensions aren't enough to calculate volume, which I understand to be the key to the dosage level required.  Maybe the third dimension is small and that results in a lower tumor volume than might be expected for a 20mm x 13mm tumor, and thus less time and less total radiation is needed (my uneducated theory). 

Can anyone comment on whether you think the treatment time was surprisingly short, given a two-dimensional tumor size of 20mm x 13 mm?

The second treatment will be in the morning (Friday) with three more next week, Monday through Wednesday.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #3 on: April 14, 2017, 12:04:54 pm »
Second treatment completed today (Fri. April 14, 2017).  30 minutes again.  Still no side effects from the radiation or the 4 mg. of Decadron before each treatment.  The 3rd of 5 treatments will be on Monday the 17th.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #4 on: April 17, 2017, 11:14:11 am »
Third treatment completed today (Monday, April 17, 2017).  Continue to feel fine.  Two more go go:  tomorrow and Wednesday.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

alabamajane

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Re: My CyberKnife/AN Journey Begins
« Reply #5 on: April 17, 2017, 04:02:29 pm »
Good luck with treatment and thanks for the updates.
I wish you success with this treatment,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #6 on: April 17, 2017, 07:02:42 pm »
Thanks, Jane.  And also thanks to Patti, who replied last week.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #7 on: April 18, 2017, 03:27:13 pm »
4th treatment completed today (April 18, 2017). 5th and final is tomorrow morning.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #8 on: April 19, 2017, 09:28:21 am »
5th and final treatment completed today.  No symptoms from the treatments.  The first followup MRI will be in 6 months.  I'll post again if anything significant comes up in the meantime.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

mandihester

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Re: My CyberKnife/AN Journey Begins
« Reply #9 on: April 19, 2017, 01:13:18 pm »
I'm glad your treatment is over and I hope you have no ill effects. I'm interested to see what your 6 month scan shows. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #10 on: April 19, 2017, 01:20:57 pm »
Thanks, mandihester.  I will plan on posting the MRI results.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

AZdebi

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Re: My CyberKnife/AN Journey Begins
« Reply #11 on: May 03, 2017, 05:31:50 pm »
Happy to hear all went well. Thank you for the updates :)

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #12 on: May 17, 2017, 12:03:25 pm »
This is just a routine update one month after the five Cyberknife treatments.

I have felt no side effects from the radiation treatment. 

I had an appointment last week with the Neurotologist that included another hearing test.  I am not sure why another test was needed just 3 weeks after the radiation.  The tests showed no change in hearing from the test that was done a couple months before Cyberknife (which showed a 90% loss in the AN ear).

The next scheduled event is the first followup MRI at 6 months post-Cyberknife.  That will be in October.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

dalemccl

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Re: My CyberKnife/AN Journey Begins
« Reply #13 on: September 18, 2017, 06:19:39 pm »
I haven't updated this thread for a while so I'm posting a 5-month post-Cyberknife update in case it is useful to anyone who is new to AN and is doing research.  When I was researching earlier this year, I found the updates that others posted regarding their on-going experience to be helpful to my understanding of what I might expect after CK. 

For the first four months after CyberKnife I had no symptoms that weren't already present before treatment, which were 90% hearing loss in the AN ear and mild tinnitus in that ear.  (Actually I think my hearing loss MAY be worse, but I have no objective measure of that.  It isn't useful hearing anyway, whether it's a 90% loss or more than 90%.) 

Starting at four months and two days after the last CK treatment, I started getting some episodes of hemi-facial spasm on the AN side.  Over a period of a week I had about 7 or 8 episodes.  Most were mild and I could just feel a mild tugging on the facial muscle, downwards from my eye and upwards from the corner of my mouth.  A couple episodes were stronger and I was able to get to a mirror where I could see that the corner of my mouth was pulled upwards on the AN side, so my face looked asymmetrical.  The episodes lasted less than a minute and didn't hurt; they just felt weird.   In the 3 weeks since that week, I haven't had any further episodes.  So they seem to have subsided, although I know from reading the experience of others, they can come back.

A 6-month MRI is scheduled for mid-Oct, followed by a visit to the radiation oncologist to get the results. I'll report back then, unless something significant happens before then.
10/2015 16mm x 9mm right-side AN found. W&W
01/2016 15mm x 6.7mm. Still W&W
01/2017 19mm x 10 mm.  Decided on CK
04/2017 20mm x 13mm  prior to 5-session CK at Parkview Fort Wayne, IN
10/2017  6-month MRI: 20.6mm x 12.9mm

orange37

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Re: My CyberKnife/AN Journey Begins
« Reply #14 on: October 17, 2017, 08:45:09 pm »
Hi dalmeccl,

Thank you for sharing your Cyberknife journey! I'm glad to hear the semi-facial spasms have stopped, keep us posted. My boyfriend is deciding between radiosurgery and microsurgery, and reading this forum has helped us a lot :)

I was curious, did you get your MRI results back yet?