Began CK today, what can I expect

[SKConner]

Here it is 1:45 a.m., and I'm still wide awake. I guess the steroids are making themselves known.

I had my first of five CK treatments today. Went well. No problems whatsoever. I have a 9 mm INC / an that we are zapping. Can anyone tell me is the effect of the treatments cumulative in impact as the week progresses? Has anyone else had a similar issue and approach, what was your experience? I think I'm more nervous about the steroids and effect than the treatment itself, but am not sure if I should expect any residual effect from the CK treatment? headaches?... etc... I know everyone's experience is unique and different, but anything anyone can add as to what I can generally expect as the week progresses and the week following, would be helpful.  Thanks
  - steve from ft. wayne

[Sue]

I am feeling for you as far as the steroids and sleeplessness is concerned.  Wow, that was a tough week for me. I hope you aren't on them any longer than that.  Now's a good time to start a puzzle!  Or sit and stare.  Or lie down and stare.  As far as other symptoms go, I had GK so it might be different for me.  It was just the first day that I had a headache. I physically felt fine...just tired from not sleeping. Good luck and best wishes for a swift recovery.

Sue in Vancouver

[SKConner]

Thank you, Sue... I appreciate the encouragement.

Take care,
  Steve

[shoegirl]

Steve,

Wanted to wish you well, I am sure your treatment will go well.  I didn't take steriods with my CK, so I was very tired from after each treatment.  Also, had some nausea and vomiting - I did ask the nurse for some anti-nausea meds and they helped me get through the last 2 treatments.   I was a bit dizzy after the last treatment.   It probably took about 2 weeks to feel like myself again.

Best Wishes!

[SKConner]

Thank you, Shoegirl... do you think what you felt was related to not having that protocol?

Take care, hope all goes well.

-Steve

[Chris]

I've heard about gamma knife. What is CK?
Chris

[Chris]

Ok, I read further along that CK means Cyber Knife. So many options it seems. How does it compare to the treatment I had. Please don't tell me sterotactic radiosurgery was used 20 years ago in the rest of the world lol

[shoegirl]

Steve,

I think everyone is different, so I am not sure.  I am very happy with my treatment, it was so easy.  And I really didn't feel that bad.  I think waking up from sugery would have been much, much worse.  The nausea only lasted acouple of days and after that I was mostly tired and a little dizzy.  Some patients feel great afterwards, I hope you do!   

[SKConner]

Thank you everyone for your responses.

I finished the fifth and final consecutive cyber-knife treatment today. I can't believe how smoothly it went, and how painless. The cyber-knife is a newly developed delivery system for radiation, that is able to deliver the radiation to a precise point of target, within 1/2mm (tiny) variance. The difference with the Gamma Knife approach, which is also effective and well tried, is that the Cyber-knife is based on the most recent research and technological developments. It also does not use the cobalt based radiation, but another form. The other main difference than the Gamma Knife, is that the Cyber-Knife technology allows the robot to monitor and adjust for any (in my case) head movement. If there is any slight movement at all outside the target zone, the Cyber-knife immediately stops, readjusts before moving on, unlike the Gamma Knife which keeps firing away. The Cyber-knife monitors movement at 10 times per second, is what my understanding is.

The cyber-knife - procedure involves being fitted with a plastic mesh mask that semi-hardens and this is what is used to bolt your head to the table. The Cyber-Knife team consisted of a radiation oncolgist; my ENT surgeon; two physicists, and the tech support team. They took all the MRI's and CT Scans, merged them into a computerized program that allowed them to precisely develop a program of radiation delivery to the precise point of my tumor. I believe mine happened to deliver 211 beams of radiation per treatment to a tumor that is about 1/2 inch in size (inter-cranial tumor between the ear drum and brain).

I have experienced absolutely no side effects...no nausea, no dizziness, no facial numbness, or balance problems.

I would strongly encourage the Cyber-Knife be well explored before being ruled out. It may or may not fit your particular situation, and I do know that the Gamma Knife procedure remains also a tried, true and accurate system.

Now, I start coming down off the steroids in the next week, and will return in a few months to do follow up  MRI's, etc..to monitor results.

Thanks to all, and I will be glad to share any experience I can that would be of help to you.

-Peace,
   Steve

[shoegirl]

Steve,

So glad to hear that all went well with your CK - as expected.  Congratulations!  Wishing you the best possible results!!!!!  Keep us updated on your followups. 

[ppearl214]

Hi Steve,

Sorry I am chiming in late but welcome... and welcome to the AN Ck troups.  I can (as well as many other radio-surgery patients) can attest to the steroid side affects (me, personally being meds sensitive, didn't do well with Decadron post CK).  I am curious as to how many Gy you had during your 5 day course/dose..... I also had a 5 day dose at Beth Israel in Boston.

In reading your posts, I'm thrilled to hear you are doing so well and tolerated the treatments (heck, mis-stated as what all is there to truly tolerate during CK? )  Looking forward to your follow ups and see how you do along the road. I/we know the wait game for necrosis (tumor death) can be tough but life certainly does move on..... and we're here if you need.

Congrats on doing so well! Hang in there!
Phyl