Author Topic: CyberKnife Treatment Journal (Stanford)  (Read 22491 times)

Bobette

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Re: CyberKnife Treatment Journal (Stanford) - DAY THREE - July 18, 2012
« Reply #15 on: July 19, 2012, 08:36:02 am »
Well, it's a done deal!  Had my last treatment at Stanford yesterday.  I won't be back there for six more months for a MRI to confirm the death of the tumor.  (Toomer -- my last name is Tolmer, so it seemed appropriate). 

On day three, everything went just like the previous days -- was given the Decadron and the anti-nasea pill and onto the table I went.  I was VERY relaxed and even opened my eyes a few times to see "Dino" (the nickname Stanford uses for the CyberKnife machine) moving around me. 

After treatment, I actually went to an outlet store and bought some new shoes!  Went home and went to bed.  I actually did not sleep well last night, I don't know if it is the build-up of the steroid pills or just my mind racing about all the things I want to accomplish now that treatment is behind me.

This morning I have fullness in my right ear.  I woke up feeling very tired, but I am drinking a cup of coffee and starting to come out of the fog.  I am planning on going to work and on with my life (thanks Mary for the encouragement!)

Dr. Soltys reminded me when I left yesterday that I have been on steroids for the last 3 days and the steroids are masking any symptoms I might have.  (No more steroids.)  He said "don't be surprised if you have some symptoms but they are ALL transient and you can call us if you need anything."  I will be sure to keep you up to date on my progress. 

For any of you considering CyberKnife, I have to say that this seems like a miracle to me.  The doctors say 96% chance the tumor will die and the treatments were VERY easy.  Now it is healing time.  Also Dr. Chang did mention to me that his CyberKnife patients do seem to be impatient about the healing process because the treatments are so easy -- his surgery patients expect ups and downs and a long process of healing and the CyberKnife patients because of the ease of the treatment seem to forget they have a healing process too. 

One day at a time, but the outlook is good.   :D

Bobette



millie

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #16 on: July 20, 2012, 09:02:05 am »
Thanks for that insight on the recovery process from cyberknife.  I would think that applies to gammaknife  surgery too.
Here's to a good strong recovery!
Millie

Bobette

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Re: CyberKnife Treatment Journal (Stanford) - DAY THREE -
« Reply #17 on: July 21, 2012, 11:40:14 am »
Hello Everyone!

Just wanted to give a little update on me following the CyberKnife.  I have to say the treatment was very easy - now the recovery part.  I was told by Stanford you can work, you can drive, etc. etc. during treatment.  After these last couple days I think that is a little optimistic.  My humble suggestion is that if you have the benefits at work that would allow you to take some time off, take it.  These treatments are easy but I can tell my body is not functioning at 100%.  I went to work on Thursday and saw all the work piled up on my desk and immediately started crying.   :-[  (Coming down off the steroids?)  I also immediately realized that I did not have the energy to make it through the full day.  I sat down and told myself I would do what I could that day and then go home.  I worked 6 hours and then went straight to bed.

On Friday morning, I knew there was no way I could do all the walking I would need to do to get to work.  I was still exhausted, depressed and my head felt sore, especially at my temples.  I stayed home all day and watched TV and slept.  I did take some Tylenol and it helped with the sore temples.

Today, Saturday, the depression is starting to lift.  I am taking it easy today and do want to at least get out in the sunshine, even if it is sitting outside in a chair in the sun and maybe getting a pedicure.  That's probably about it for today.  I did just take some Tylenol for my slight temple ache. 

I feel like you do when you are getting the flu, tired, achy, etc.  Nothing horrible.  Absolutely no balance issues.  I have tinnitus and it has changed to more of a crackling sound.  I'm listening to music now.   ;D

My best to you all,

Bobette

JWW

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #18 on: July 21, 2012, 12:42:48 pm »
Thanks for the update and PM Bobette.

Why do you think your temples are hurting on both sides? Do the beams hit both temple areas? I was under the impression that the beams intersect at the point where the AN is...that side only?

Rest, eat, sleep, feel better......take care.

JW

MaryEBS

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #19 on: July 21, 2012, 08:29:25 pm »
Hi Bobbette -
Congrats on completing your treatment.  Your return to work sounds similar to mine.  I took one week off for treatment etc and then went back to work... first week I lost a day and a half... second week one day... third week I made it through.  I have found that coming home from work and taking a nap for about 45 minutes really helps  with the fatigue.  Do what you can don't push too hard... getting yourself stressed will only cause the symptoms to get more intense.  I think I cried quite a bit the first couple of weeks... let yourself feel what you need to feel.  I am at 6 weeks now and it is getting better... It really does get better.  My ear feels full more often now than before, the tinnitus more apparent and a throbbing on the AN side... I just remind myself that these are just signs that the radiation did what it was supposed to do... now my job is to be patient and let it happen.   

Keep reaching out... you aren't alone.  Take care.

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 #20 on: July 22, 2012, 07:37:26 am »
Following your reports, Bobette, and praying for you.
Millie

Bobette

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #21 on: July 25, 2012, 01:28:18 pm »
Well, one week post-CyberKnife and I am feeling pretty darn good today.  I notice day by day my energy seems to be coming back and I am doing better at coping with this LOUD screeching in my head.  I bought some new headphones and have been listening to music when I feel the sound is getting a little too loud to cope with. 

I have only missed one day of work since the treatment (I don't suggest working if you don't have to).  Yesterday I was able to get a fair amount of work done and then went to AT&T Park and watched 3 innings of the SF Giants game before going home and to bed. 

My head and temples are no longer sore and I have not taken any Tylenol today.  My only real complaint is the tinnitus.  I am going to re-read Derek's post on a healthy lifestyle and start incorporating more of these into my life and see if the tinnitus settles down. 

I remember going to a AN support group a few months ago and a gentleman walked in with the most beautiful smile and happy countenance.  He said he had had CyberKnife two weeks before and felt great!  I can see myself there in another week.

Bobette

 ;D

Jim Scott

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #22 on: July 25, 2012, 02:02:04 pm »
Hi, Bobbette ~

Following your Journal and delighted to learn that you're doing so well in so short a time.  A real testimony for the efficacy of CyberKnife.  May your healing continue apace.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ash

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #23 on: July 30, 2012, 12:24:39 pm »
Hi Bobette

It has been a while since I have been on, I hope you remember me. I have had my ups and downs but overall ok. I was on steroids twice after treatments. The first time may have helped but I do not think the second did. The next thing that stays on your mind is the 6 month MRI and you think about it more as time goes on. I actually stopped signing on ANA to help forget about the wait. The symptoms should settle over time but with some flareups. Be strong, everyone is here to help. Your and my MRIs WILL show necrosis!

Bill 
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

Bobette

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #24 on: July 31, 2012, 06:58:18 am »
Happy Tuesday Everyone!

I'm happy to report that things are still going pretty well. 

The tinnitus is constant (it was before).  It is louder, but it seems like it does simmer down a bit here and there.  I may be coping with it better, I am not sure.  My hearing seems to be a little worse.  My next hearing test is in January when I have the MRI. 

My energy levels are okay.  I have been going to work every day and getting a fair amount of work done.  I am definitely not on my "A game," but still feel like I am useful at work.  I work for a law firm and the work definitely does not stop.  If we hadn't switched law firms, I would definitely be taking advantage of the short term disability benefits I had (I think 2-3 weeks would have been nice). 

Tomorrow it will be two weeks since my last treatment. 

@Bill - I'm glad to see you are back on the boards.  I totally understand worrying about the next MRI.  When I was leaving after my last treatment I said "I hope this works."  Judith, one of the radiation oncologists said, "Oh it will work, no doubt about it."  When I get discouraged, I think about what she said. 

My SO tells me I should stay off these boards and move on, but I don't agree with him -- I have lost some things with this AN - a good deal of my hearing in my right ear, quiet (thanks tinnitus!), energy, and peace of mind.  I need the encouragement from others and I want to be an encouragement to others. 

We will definitely get good reports at our next MRI. 

Bobette

Jim Scott

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #25 on: July 31, 2012, 08:00:20 am »
My SO tells me I should stay off these boards and move on, but I don't agree with him -- I have lost some things with this AN - a good deal of my hearing in my right ear, quiet (thanks tinnitus!), energy, and peace of mind.  I need the encouragement from others and I want to be an encouragement to others.

Bobette ~

I admire your attitude and appreciate that you want to encourage others. These forums need folks like you with a willingness to share their stories and offer both understanding and encouragement to AN patients that are fearful, confused and/or just overwhelmed.  I look forward to your future postings. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

skipg

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #26 on: August 08, 2012, 05:10:38 pm »
Thanks Bobette for the all the updates. I am at decision time and am looking at the Cyberknife. The Doc here trained at Stanford and comes highly recommended. One final look for me is the Proton Therapy. It is close by but does require 30 visits. Does not use photon as the radiation does but uses protons that target the tumor and then the energy rapidly dissipates without affecting surrounding tissue. Have an appointment at their facility and will know more. Back in the research mode and checking this out.
Thanks again and am glad you are doing so well.
Skip 
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

millie

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #27 on: August 08, 2012, 06:48:14 pm »
Thank you for sharing your story, Bobette.  I've been following your posts and you are a great help to me.  I am glad you're feeling stronger.
When your ears are ringing, remember you are not alone!   Rest as much as you can after work.
Millie

daniel-ny

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #28 on: August 15, 2012, 03:06:45 pm »
Bobette;
I just want you to thank you for your journal. I had my CK treatment done  at Stanford last week, and days before my treatment your journal gave me a great inside about what to expect. You have no idea how much of a help your journal was.  I must read it 10 times, even the night before simulation. BTW I counted 6 songs for my treatment, however the mask  was a whole ordeal (even with ativan). It made me very anxious, but I played the trick of counting the songs, and the 2nd and 3rd treatment were a little better. Anyway, from NY, Bobette: THANKSSSSSSSSSSS and and the best on your journey.
Dani

Bobette

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Re: CyberKnife Treatment Journal (Stanford)
« Reply #29 on: August 20, 2012, 07:01:37 am »
Hello Everyone! 

Four weeks out and all is well.  I am not experiencing any headaches, still have the tinnitus (but I am coping quite well with it), and still get tired in the early evening.  I do have balance issues, but only when I close my eyes, so I keep them open as much as possible (especially while walking!) LOL!  Work is okay, I do have one co-worker who is very unsupportive, but I am learning to cope with that also. 

@Dani - I am so glad that I have been an encouragement to you.  Thank you so much.  Please keep in touch and let me know how you are doing.  Everyone on this forum is so supportive and encouraging.  I am so thankful that this site is here.  Wasn't Stanford amazing?  They called me last week to check up on me. 

@Millie, Mary, JW, Jim, Skip, Bill, Mike D., Jesse, Tisha - What a blessing and encouragement you have been to me, thank you so much.   ;D

Had lunch with my former co-worker who also had an AN (we call it tumor talk).  She had translab at House 1 1/2 years ago (and was not a candidate for CyberKnife or Gamaknife).  She is doing well also.  It is so encouraging to talk to others in the same boat. 

Hope you are all doing well.   ;)

Bobette


 


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