Author Topic: CyberKnife Treatment Journal (Stanford)  (Read 25274 times)

Bobette

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CyberKnife Treatment Journal (Stanford)
« on: July 11, 2012, 08:25:43 pm »
Hello Everyone!

Today was my pre-treatment day at Stanford.  I wanted to start my journal here because I have had a lot of worry over how this all would go down.  I found out today that my case worker was supposed to provide me with an informational DVD at the time I booked my treatment, but did not. 

I am happy to report that so far, all my worry was for nothing.  I arrived at Stanford this morning at 7:45 a.m. and reported to the CyberKnife Unit.  I was greeted by an RN who explained to me what would transpire today.  First she put in an IV line.  She explained I would be having a Cat scan and an MRI and this would keep me from having to be stuck twice (which I appreciated).  The nurses there were very nice, I found myself laughing and joking with them and talking about the All Star Game. 

Next stop - Cat scan and mask making.  I have never had a Cat scan and actually did not know I would be having one today.  I laid on the table and they placed a bubble wrap type material underneath my head that instantly started shrinking and conforming to the back of my head and actually felt very comfortable.  Then out came the material for the mask.  I was thinking I would be a Freddy Kruger look-alike, but they showed me a rectangular piece of blue plastic-looking material that had small holes.  They wet it and placed it over my face, stretching it down towards the table and affixing it to the table.  The plastic turned into a mesh-type material as it stretched, making it very easy to see and breathe (that was my biggest worry, would I be able to breathe well). 

The contrast was injected, called Visipaque (147 mil) and then into the tube for a very short Cat scan, about 5 minutes top.  After the scan I was shown my mask which had dried -- it made me laugh!  I was told I would need to drink at least 6 glasses of water before I drank any other liquid such as soda, ice tea, coffee, etc. in order to get the contrast to flush out of my body.

After that, a nurse escorted me to the Radiology Dept. at the Main Hospital for my MRI.  The MRI was also short and sweet (about 20 minutes). 

My next stop was to ENT for an audiogram.  Found out my hearing loss has gone from moderate to severe.  The audiologist said my speech recognition test came out well and that after treatment I may be a candidate for a regular hearing aid. 

Next trip to Stanford, Monday afternoon at 4 p.m.  I am really looking forward to being a postie.  I will update again on Monday.

I feel very happy and joyful and very optimistic!

Bobette


neuroma_racer

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #1 on: July 12, 2012, 10:43:50 pm »
best wishes,
i for one will be following closely, as i start this journey august 6th, for a five dose treatment course.
so please keep the play by play commentary coming.
aces,
jesse
mild hearing loss - 12/'09
left 4x5x7mm, intracannicular schwanomma
MIDDLE FOSSA surgery 4/'10, Dr John McElveen, et.al.
was actually a FACIAL NERVE NEUROMA
hearing worsened 4/'12 - Tumor quadrupled to 9x9x15mm
cyberknife 8/'12
1.5yr MRI shows shrinkage % 85% necrosis
LEFT hearing & tinnitus SUCK

Tisha

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #2 on: July 13, 2012, 07:08:35 am »
If you thought the prep was no big deal, then you are in for a pleasant surprise for the actual treatment.  You just lay there for 30 minutes and relax.  I think I even dozed on and off...I just went to my "thinking" place.  I didn't want any music, as the noise bothers me in a room like that.

I took a camera and had the guy take a picture of me all strapped down with the mask, blanket, etc., so I could show everyone.  (makes it look really bad!)  LOL!  You'll get lots of sympathy...ha/ha.   They don't mind taking pics, i think they do it all the time.

Tisha    P.S.  good luck!
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

millie

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #3 on: July 13, 2012, 07:32:40 am »
Bobette-You sound wonderful!
Thanks for the updates on how the cyber is proceeding!  I appreciate your sharing as I have had a second MRI and my AN has grown longer from 1.2 (or 1.1 depending on which doctor )to 1.4 these last five months.  Because it is growing my two ENT's say it is time to talk about the pros and cons of procedures.  I don't know if these teams offer cyberknife.  I do know they do all three types of surgery and one does gamma for sure.
Keep up the great work and we'll be following you with prayers and  good wishes.
Mil

MaryEBS

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #4 on: July 13, 2012, 08:48:36 pm »
Hi Bobette -

Good to see you posting and hear how positive your experience is.  You really have been through the worst of things now. I think the shock of the mesh material coming down over my face was the worst for me.  Your treatments will be the easy part.  Funny that Tisha said she dozed off... I remember thinking my mind was racing but I was actually sleeping when the last treatment was over. 

Looking forward to hearing your thoughts when you are done.  Nothing but good wishes coming your way.

Mary

________________________________________
Diagnosed 4/28/12
AN 5.mm X 6.mm X 10. mm
CK Treatment 6/11/12  -  6/13/12

MDemisay

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #5 on: July 16, 2012, 07:54:42 am »
Hi Bobette!

Good to see your positive outlook! It will help those of us that are still deciding whether to go through with this treatment or not.  As you know, I went through GK treatment so, it helps to get a CK perspective. Please keep us posted when you can!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Bobette

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Re: CyberKnife Treatment Journal (Stanford) - DAY ONE - July 16, 2012
« Reply #6 on: July 16, 2012, 09:00:20 pm »
Well today was D day!  (I mean CK day!)   ;D

I arrived at the CyberKnife unit; signed some authorization treatment papers and sat down with a woman radiation oncologist.  She told me my tumor had grown at its largest point, so it is now 2.3 cm (in just 4 months!).  She agreed that I made a good decision to treat and not watch and wait.  I was given 4 mg of Decadron (steroid) and another pill that was an anti-nausea pill. 

They took me into the CyberKnife room with my family.  They all stood there while I laid on the table and was adjusted and fitted with the CyberKnife mask.  My SO even took a picture of me lying on the table with the mask on.  My I-phone was put in a dock and my music started to play. 

Everyone left the room and the process started.  The machine takes x-rays during the treatment to check any movement to keep the radiation beams on track.  When the x-rays are being taken, the table you are on moves, so I knew when it was taking x-rays.  I kept my eyes closed during most of the treatment.  The machine was not very loud but I could sense it moving around me.  I was able to totally relax and the time flew by.  It seemed a few minutes later a technician came in and said I was done. 

I am getting ready for bed now, they want me to rest.  I feel really good.  I don't feel any different than before treatment (other than relieved that I am on my way).  One treatment down, two to go!!!

MDemisay

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #7 on: July 17, 2012, 10:24:09 am »
Way to go Bobette!!!!

First treatment done rest, rest you did a good job today your tumor is being given its death blow! Keep us posted!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Tisha

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #8 on: July 17, 2012, 10:35:06 am »
That's great!  It truly is such an easy procedure.  Good luck with the remainder!  Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

MaryEBS

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #9 on: July 17, 2012, 07:17:28 pm »
Hi Bobette!  Thanks for the update!  You are well on your way... expect 2 more days of the same.  Best advice for now is to rest all you can.  Post to let us know your progress when you can.

Mary
________________________________________
Diagnosed 4/28/12
AN 5.mm X 6.mm X 10. mm
CK Treatment 6/11/12  -  6/13/12

millie

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #10 on: July 17, 2012, 08:26:24 pm »
Carry on. Bobette!  Praying for you.  Millie

Bobette

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Re: CyberKnife Treatment Journal (Stanford) - DAY TWO - July 17, 2012
« Reply #11 on: July 17, 2012, 09:35:05 pm »
Hello Everyone!

Just got back from my treatment Day Two.  Everything went just like yesterday -- was given the Decadron and the anti-nasea pill and onto the table I went.  I was much more relaxed today and counted the songs - 8 in all and then they came in and said I was done.  I feel very tired right now, but that's it. 

Also wanted to report that I woke up this morning with LOUD tinnitus, but it quieted down a bit after about an hour.  I felt great.  Went to work on the BART train to San Francisco.  The train goes into the Transbay Tube, which is an 8 mile tube under water.  When I left the train I felt a little wonky, but stood for a few minutes on the platform and it subsided as quick as it came.  Otherwise, a great day!

Tomorrow is my last treatment.  I am so excited.

I am very thankful this machine was invented.  God Bless you John Adler for your invention!  Anyone who is considering an alternative to open surgery, I think this is a good one.  I was on a one year watch and wait when I came across Francesco's website.  After listening to his interview with Steven Chang at Stanford, I knew I needed to make an appointment and see him and not wait a whole year.  The link for his website is here:  http://www.myacoustic.org/home.html

Good Nite Eveyone and thank you all for your well wishes. 

Bobette



MDemisay

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #12 on: July 18, 2012, 12:52:25 pm »
Bobette,

I am so excited for you that this will be your last day of treatment! I must say your peaceful attitude about treatment is what makes it attractive. Once you have chosen your docs and trust in their judgement there is not much else to do but to Let Go and Let God! I am glad that you will be joining the toastie postie club soon! I wish you rest and healing. Post when you can and drop me a PM when you can.....

Your GK friend,

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

millie

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #13 on: July 18, 2012, 05:59:08 pm »
Great news, Bobette!  I can't believe you are back to work!  Just a question-did the doctors say the wonkiness would lessen, or (dare I hope) go away completely?
You did your homework and found your doctor and the method right for you!  We can do this!
Millie

MaryEBS

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #14 on: July 18, 2012, 07:53:04 pm »
So Happy to hear that day 2 went so well for you!  Two down one to go! 

Just rest when your body tells you to ... the relief when you leave the last session is such a wonderful feeling.  All there will be left to do is get on with the rest of your life:)

All the best to you -

Mary
________________________________________
Diagnosed 4/28/12
AN 5.mm X 6.mm X 10. mm
CK Treatment 6/11/12  -  6/13/12