Author Topic: Cyberknife Detailed Patient Experience (long)  (Read 4547 times)

jvastola

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Cyberknife Detailed Patient Experience (long)
« on: December 06, 2006, 05:21:17 pm »
So, I have finished my three days of Cyberknife treatments at Rocky Mountain Cyberknife.  All is well, and now the next round of waiting begins. I'm reminded of an old Steve Martin cheer "Die you gravy sucking pig."  Anyway, I have never seen a detailed description of what the CK process is like, from the patients perspective, so I thought I would give it a shot.  If anyone had any questions please feel free to post them here.  Also, of course this is just my experience.  You mileage may vary.


Set up day

In my case the consult with the radiologist and the set up day were one in the same.  I met with the radiologist who went over the details, side affects, etc.  Then the CK nurse took a brief medical history, inserted the IV and gave me an injection.  Then the CK Technician took me into a room to have the mask and pillow made.  The mask took two tries to get right for me.  The mesh sets very quickly and needs to be clamped down on three sides.  The pillow on the other hand sets very slowly.  Next we went to the CT room with the mask and the pillow.  They clamped the mask on and did the CT with another dye injection.  The CT was very fast and quiet compared to the MRI that started this whole thing.  That was it for the set up day.  The staff was very friendly and extremely efficient.  I never waited around for more than a few minutes for any step of the process.



Treatment days

All three treatment days were very similar.  They wasted very little time getting me on the table and getting started.  The mask was very tight the first day and made the 45min treatment a bit uncomfortable, but I kept thinking that it was way better than 8 hours on an operating table.  They mad an adjustment and the second and third says the mask was much more comfortable.   The table you are on moves around a bit, and you hear some clicks and motors.  Then you hear a sound that is best described as a large mosquito.   I believe this is the accelerator powering up.  In my case I could see the robot through the mask for about a third of the treatment.  The tech came into the room a couple of times to adjust things.  They had music playing.  The first day I was extremely glad to get the mask off.  I had waffle head across my forehead and across the top of my head.  Then I took one pill, a steroid, and I was sent on my way.  Again, the staff was very efficient.  The second and third days were much lower stress.  Just knowing what you were up against and that it was almost over was great.

Treatment afternoons/evenings

I did feel a little sunburnt on the AN side, although I was not,  a slight headache and little disoriented for the first few minutes immediately after treatment.  That all went away in the first half hour or so.  Later on in the day, about three hours after treatment, I felt pretty grungie.   I remembered that the nurse had said that the steroid would make me hungry.  I had dinner and felt much better.  I found that eating was key to feeling good after treatment.  Even though after the second treatment I could not taste my food at all.  What a waste of a good prime rib!!


Conclusions

For my situation this was the correct choice.  I am self employed and I could not be completely out of commission for an extended period of time.  I feel very confident with RMCK.  They do much more cancer treatments there, and not as many AN's but Dr. Mcneely was very involved in the Stanford program and I figure if they can successfully kill off a tumor along  spinal cord or in someone's lungs and compensate for their breathing, an AN should not be a problem.  Also, the Drs over on the Cyberknife support group highly recommended him.

My wife took some pictures of the process, unfortunately the picture of me in the mask was taken with her phone and it won't email.  If I get it out, I will add it later.  The t-shirt I am wearing has an xray of someone's head with a pile of doggie ahhh..... doo where the brain should be.  I modified the caption to read "My test results came in, it's not a brain tumor"  We all got a laugh out of it.

I hope his helps someone and special thanks to all of the folks here.  I can't imagine making all of these decisions without the help of all of you.


Jim

Link to the pictures

http://www.frappr.com/?a=viewphoto&id=2213658&pid=3328685&myphotos=1




« Last Edit: December 06, 2006, 05:24:22 pm by jvastola »
Jim
San Jose, CA
Diagnosed 10/4/06
2.2cm x 2.4cm x1.9cm Left side
CK December 4-6 2006
6 month MRI showed no cell death
12month MRI Tumor size 1.9x1.9x1.6
14 months my hearing stars to return!!

nancyann

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Re: Cyberknife Detailed Patient Experience (long)
« Reply #1 on: December 06, 2006, 05:33:36 pm »
Hi Jim:

Cool pictures (wish I could navigate a computer like you!)

Glad it all worked out!!

Best wishes for a great future, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Derek

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Re: Cyberknife Detailed Patient Experience (long)
« Reply #2 on: December 06, 2006, 06:17:25 pm »
Hi Jim...

Thanks for posting your journal account and pics of your CK treatment experience which will be of great benefit to those contemplating that particular treatment option. Great to know your sense of humour has remained intact!

Very best wishes for a long term successful outcome.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Mark

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Re: Cyberknife Detailed Patient Experience (long)
« Reply #3 on: December 06, 2006, 10:43:51 pm »
Jim,

Congrats on successfully getting through your CK treatments up in Boulder. best wishes for a great outcome and thanks for an excellent recap of the process from a patient's perspective. I think it would be invaluable for patients down the road and I would encourage you to submit your story to the Admin ( Valorie) on the CPSG board. There are some other posters here who also have great stories to share and haven't yet ( and you know who you are , hint hint  ;) ) and it is always appreciated when they can be posted on the web site for others to read.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: Cyberknife Detailed Patient Experience (long)
« Reply #4 on: December 07, 2006, 08:42:33 am »
Hi Jim,

Congrats on becoming a "postie" (post-treatment)!  Thrilled to hear that everything went well... and you step-by-step account of what occurs for CK is wonderful. Thanks so much for sharing!

(Mark, I'm assuming you aren't sending those *hint-hint*'s to me, eh? ;) )

Best wishes Jim! Onward and upward now!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pearchica

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Re: Cyberknife Detailed Patient Experience (long)
« Reply #5 on: January 21, 2007, 11:12:05 pm »
Thanks for the info! 8) I go to Stanford to check out the ck option myself on Tuesday 1/23.  Very interesting to hear about your experience (from what hearing I have left!)  Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys