Another Postie Toastie

[CattAN]

My Dear Fellow AN'ers.

On Wednesday, September 2nd, 2015 at about 10:15 am I joined the ranks of Postie Toasties.  My treatment was CyberKnife single fraction, which is quite unusual.  My Radio-Oncologist, Dr. Gibbs at Stanford Healthcare, recommended this type of treatment since I lost most of my hearing in the AN ear.

Here are the highlights of my experience:

Before treatment:

The  simulation was a bit uncomfortable as the malleable plastic is pulled against the face while hot.  The nice surprise is that I get to keep the mask, it worked really well holding snacks I bought after my radiation session, as I wanted to test my taste buds.  They weren't working right for about an hour or so. 

My day started with an oatmeal breakfast and a Grande Cappuccino.  I had confidence in my doctors, and this is very important in my opinion.   I had the opportunity to ask Dr. Chang many questions, on various aspects of this type of treatment.  He is very responsive and provides outstanding patient care. Dr. Gibbs is very compassionate, and made me feel very comfortable trusting her decision to use a single fraction.  She referred me to an Audiogram at the new, State-of-the-Art, Eye-Ear Clinic at Watson Court.  I highly recommend it.

During and after treatment symptoms:

* At one point I felt my eye flutter. halfway through the session.

* The pressure in my ear increased as time went by, but is tolerable.  When the robotic arm was delivering intense beams, I started to feel pressure on the right side, and loud tinnitus started.  I kept my eyes closed most of the time. 

What helped:

* The Radiology Technician interrupted at intervals with time left until the end of treatment.  This helped me a LOT to get through it.

* Throughout this process, I was swallowing and breathing as normal.

* My music selection had loud wind section oscillations that muffled the squealing and squeaking of the robotic arm.

Happy Ending:

Once the Nurse and technician came in to announce my ordeal is over, I felt so relieved. I had a surge in energy, as the steroid kicked-in.  This kept going for the rest of the day, I experienced an increase in appetite and sleepless again.

The tinnitus has improved, even though I was on the plane coming home.

I hope this post will help those who are still on the fence, or plan to have radiosurgery.  For me, this was the best option.  Stanford Healthcare provides excellent patient care.  Thanks to those who recommended Stanford CK for AN treatment.

Best wishes to ALL on your journey with AN.

CattAN

[arizonajack]

Congratulations.

Here's hoping your post nuke experience is as uneventful as mine has been.

[PaulW]

Cyberknife has now been around for over 10 years.. I believe while the studies have not been released yet, the long term statistics are showing the same results for single fraction or multi fraction.
I believe multi fraction may help in the short term to preserve hearing but does not seem to affect the long term result.. Multi fraction does expose you to more radiation and therefore higher risk of induced cancers and malignant transformation. So expect to see more single fraction in the future for AN's

[CattAN]

My does averaged 13.5 Gy (range 11 to 16 Gy).  I believe the Biologically Effective Dose (BED) is the same either by single or multi-fraction.  Even the 26 session radiotherapy has the same BED.  I did lose my hearing in the AN ear, and an Audiogram was done the day before treatment that confirmed hearing loss.  So this is why they recommended the single fraction. 

Interesting thing that Dr. Chang told me that if he were to cut out my tumor after radiation and send it to the lab, it would be alive and well.  Apparently it takes a very long time to die, hence the anticipated symptoms. 

[arizonajack]

My does averaged 13.5 Gy (range 11 to 16 Gy).  I believe the Biologically Effective Dose (BED) is the same either by single or multi-fraction. 

Also similar to Gamma Knife. My average dose was 13 Gy.

Interesting thing that Dr. Chang told me that if he were to cut out my tumor after radiation and send it to the lab, it would be alive and well.  Apparently it takes a very long time to die, hence the anticipated symptoms.

Right. Your six month post nuke MRI should show necrosis (dark spots) and slight swelling of the tumor that indicates dying or death of the tumor. Then it could take a couple of years until you see shrinkage.

See:

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

[CattAN]

ArizonaJack,

Yes, it is similar to Gamma Knife, except that the mask does not get attached with screws. 

Two days after treatment:

I still feel pressure on the right side of my head, and washed my hair today for the first time after treatment; the scalp feels sensitive.  I have a little numbness or tingling in my lips and tongue area.  This is similar to how I feel after visiting the Dentist. 

I did a workout that consisted of 30 minutes on an elliptical machine and 10 minute stretch.  I was a bit disoriented afterwards and almost ran a red light.  So not sure if all this is related to my treatment or not.  The whole experience is quite traumatic, as the beams were pointing at both sides of my head, chin, and mouth!

CattAN

[arizonajack]

I still feel pressure on the right side of my head, and washed my hair today for the first time after treatment; the scalp feels sensitive.  I have a little numbness or tingling in my lips and tongue area.  This is similar to how I feel after visiting the Dentist. 

That stuff will probably abate in a week or two. I had 4 sore spots from the screws. Took a week to stop bothering me and another week for the marks to clear up. Didn't have the other stuff.

[CattAN]

Tinnitus volume is up, it is sort of cricket sounding.  Does this improve with time too?

[PaulW]

tinnitus got a lot louder after ck and eventually settled down. But it took a few months

[CattAN]

I can live with Tinnitus for a few months, but headache and the weird fullness in the head is uncomfortable.  So far no headache, but I was warned that 3-6 months is when it starts to manifest.

I am just wondering how all this radiation will affect my brain.  The diagram of the plan shows the radiation isodose line pretty close to the brain stem.  The brain stem actually received some rads too.  Any opinions on that?

[campbellmerlin]

I had gamma knife treatment in Portland, OR in January of 2012.  Imbalance is still horrible, tinnitus is constant and pretty much can be heard over everything else 24/7. After the GK treatment my scalp and forehead were numb/tingling/painful when touched. Dr told me it would last a few weeks, but it lasted 2 years and began to fade after that.  I have occasional fullness in rt ear (and that ear is totally deaf, no hearing returned after the GK treatment). But, I guess compared to the alternative (surgery and its possible side effects or death), I should be happy with these symptoms. I'm brand new to this forum and greatly appreciate the chance to sound off a little!