Author Topic: CyberKnife treatment at UNC Chapel Hill, NC  (Read 1740 times)

jami

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CyberKnife treatment at UNC Chapel Hill, NC
« on: April 17, 2019, 02:06:13 pm »
Hi All,

Thought I would start a thread re: my CK journey, as other’s journeys have been so helpful personally. The CK treatment is scheduled April 23, 2019 at the Radiation Oncology lab, UNC Hospital, Chapel Hill, NC.

BACKGROUND
I was diagnosed spring 2018 with a benign vestibular schwannoma on my right side. Symptoms that started this were facial numbness, tongue tingling, and feeling hungover all the time. Little did I know, my poor balance was not clumsiness, but an unrecognized symptom. My full ear was not wax, but also an unrecognized symptom.

On August 12, 2018, the vestibular schwannoma was removed at the UNC Chapel Hill hospital. The right retrosigmoid craniotomy lasted 10.5 hours, right up until my facial nerve began getting irritated. A portion of the tumor remained. My auditory and balance nerves were removed. I can share recovery/preparation/details via another post if anyone is interested.

March 4, 2019, my 6 month MRI showed some growth, or poofing of the remaining tumor.  Due to the possibility of aggressive growth, we agreed that an action based plan was preferred (vs wait and see). After speaking with the neurosurgeon, the ontolaryngologist and the radiation oncologist, my husband and I agreed Cyber Knife was the way to go.

MEDICAL CARE, all at UNC Chapel Hill, NC, and all amazing
•   Matthew Ewend, MD Neurosurgery
•   Brendan O’connell, MD Otolaryngology
•   Collette Shen, MD Radiation Oncology

DECISION MADE, GETTING READY
I called the Radiation Oncology department and let them know that the decision was made. A few weeks later was my appointment for Imaging & Simulation.

The appointment lasted ~2 hours, a bit long because I have this pesky issue where I faint (vasovagal syncope) when I freak myself out at the doctor, and then I have to rest, answer questions, etc.  Due to this, I will have medication day of the procedure to take the edge off.

We discussed the CK procedure in detail. My two big questions:
•   What to do to prepare? Show up, be ready to take hair clips out.
•   Do I need to take time off work? Some people go back to work the same day, some take time off. (I am taking 2 weeks off, a pretty high stress job and I don’t want to be multi-tasking while I sort out the CK experience).

I had a CT scan with contrast and wearing a fancy mask. The mask was warm when they put it on, but was cool when complete. It was like a quiet MRI. Then I went home.

While I have been working the past week and attending meetings, making power point slides, looking at quarterly budgets -- the amazing doctors are mapping the tumor, planning the right dose and handing the work off to the medical physicists who use a fancy computer simulation to plan the treatment, including how to deliver the right dose.

After the procedure, will share more info!

Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

gary.s

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Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #1 on: April 21, 2019, 09:56:26 pm »
Hi Jami,

Cyberknife treatment is really pretty mellow. I had five sessions last April and I think my anxiety was worse than the treatment. There really is no preparation, just get a good nights sleep, eat a nutritious breakfast and relax. I am retired so work was not an issue for me. Although, I did find that tiredness was an issue for the first 1-2 months. You might want to take a few days off just to see how you are feeling. Best of luck this week. 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

jami

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Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #2 on: April 22, 2019, 07:18:44 am »
Thanks Gary! Good to know. I took a week off (needed to do things around the house as well) so i guess i am set. So far it seems SO MUCH EASIER than surgery that i wonder if i am missing something :)
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

gary.s

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Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #3 on: April 22, 2019, 11:16:04 pm »
Hi jami,

Radiation is so much easier than surgery. My doctors gave me a prescription of Ativan to relieve my anxiety. I took a pill one hour prior to my radiation sessions and it helped tremendously. Looking back on it, I could have done CK easily without any prescription medication. I am glad to hear that you will be taking a week off. Then you can have a break where you can rest and get yourself back together again. Best of luck, and really try to relax. This is going to be a lot easier than you are anticipating. Be 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

jami

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Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #4 on: April 25, 2019, 05:58:30 pm »
Thanks for the encouragement gary.s, you are correct - the treatment was SO MUCH EASIER than surgery. (caveat - sometimes CK isn't the right treatment for where someone's situation is).

The day of treatment we showed up, had awkward conversation with all the medical staff because it was so simple (no risk of losing hearing, as that is already gone. No balance issues, as that vestibular nerve is gone....). I took Ativan prior to the session, met the physicist (not an easy word to spell), put on the mask, did 23 minutes of breathing. And it was finished.

We went for pizza and went home. I walk 5 miles a day and never missed a beat. Even did my nightly 30 min of yoga.

It is now 2 days later and I did start to feel tired about noon (after running 3 miles in the morning), with 'wonky brain' and feeling a bit of pressure in my head. I napped, woke up with double vision (hasnt happened since surgery week), but its fine now.  Glad I took a week off, just in case.

Jami
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

gary.s

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Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #5 on: April 28, 2019, 09:57:24 am »
hi Jami,

Glad to hear that it is all over and you are okay. The Wonky head lasts for awhile, so be patient with the mental confusion you may feel. I am very active also, hiking, riding my bike and horseback riding. I did feel tired when pushing myself too hard, so have to be sensitive to your body, when it needs to rest, then rest. I am one year post CK and ready for my one year MRI mid May. Still have balance issues, dizzy from time to time, and absolutely no word recognition of my AN right side. I have Phonak audeo B and Cros B which is pretty amazing. Sound is transferred with a microphone from my bad ear to my good ear. Anyways, best of luck and I am very happy that CK was a mellow experience for you. Be well and you can always send me an email message if you have questions about symptoms, etc.

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

jami

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Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #6 on: May 05, 2019, 08:10:32 am »
Thanks for the well wishes Gary.

Its almost 2 weeks post CK, the wonky head remains. Accepted today that I need to make a few changes to planned travel and work (had a 2 week travel across 2 countries planned starting next week) and I need to accept the new normal. Major taste bud changes too.

But since I had surgery in August (losing hearing + balance nerves at that time) this easy peasy in comparison. Its so helpful hearing from others on this forum about how it goes. Hope the 1 year MRI has great news!

Jami
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

jami

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  • Posts: 131
Re: CyberKnife treatment at UNC Chapel Hill, NC
« Reply #7 on: June 02, 2019, 08:28:14 am »
Time for an Update

Its been 6 weeks since the CK treatment, and I thought I would provide an update, hoping its useful for others who may be going through something similar currently or in the future.

I took 2 weeks off work after the treatment (vacation time vs medical leave as it was not determined necessary to take time off work).  I did not take any medication after the treatment.

Three items I noticed and a bit more about each.
1.   Tiredness and minor headaches
2.   Facial numbness increase
3.   Hot flashes stopped

Increased tiredness and headaches
I was more tired, and hit the proverbial wall earlier in the day. I had daily headaches, but nothing like the feeling my brain was going to blow up like before brain surgery last summer.  I iced the head a few times, but usually just popped a Tylenol.

For any symptoms and side effects, it was not nearly as bad as both pre and  post brain surgery, which always reminds me that my overall cognition last year was severe. Brain fog was constant.

The tiredness four weeks in. I still hit the wall after a really long day, but my stamina is growing by leaps and bounds. Just last week I was able to work a few 9 hour days, each with 12+ meetings during that day.

Facial numbness increase
The facial numbness remained constant on the chin area, but it also started around the eye. I also had big twitches on my eyelid, which was new.  They seemed to happen more at the end of the day.  They still happen, less frequently. As of last week, however, my right eye tears when I exercise.

Hot flashes stopped
No joking here. This portion is for the ladies. I was mid-menstrual cycle during my brain surgery last August and my period stopped then and there. Hot flashes turned on full time, and a blood test showed my AMH level is non-existent.  The morning of CK I had a few hot flashes, and even asked what I should do if I had a hot flash during treatment. It was 3 weeks after the CK before I had my first baby hot flash. Now, post CK, I have only had a handful of very light hot flashes (I fondly call them warm flashes). I cant even begin to explain this.

Whats next?
October is MRI to check results!

Hope this helped, and thanks for all the support and for reading.
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm