General Category > AN Issues

What to expect "after" Cyberknife

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Palace:
Phyl,


Do you think that you had the better luck with the lesser facial pain because, your AN was not huge?

Forgive me if my questions sound redundant as, I'm still a "Newbie."

You sound like you are enjoying life after AN and I'm happy for you.



Regards,



Pal

ppearl214:
Hi Palace

Interesting question. I did not experience facial "pain" but facial numbness. I do know that my trigeminal (facial) nerve did take a hint of a hit of radiation as I ran into dry eye (easily workable with special drops/ointments such as OTC GenTeal and Systane, etc) and only experienced that for approx 1 month... all gone now.  My facial numbess is just about gone now (every now and then, it talks back to me, but I have to admit... if it does now 1-2x/month, compared to the daily I had before, then I think I'm in much better shape now!).

So, I cannot reply as to "pain"... and hoping anyone else here that has experienced facial "pain" can chime in.  Another suggestion... go the the Cyberknife Patient Support Board (http://www.cyberknifesupport.org/forum/) and ask folks and the dr's there about facial "pain". I bet you'd get a lot of responses there.  Many of us are active on that board as well and I have a feeling Drs Medbery and Spunberg could give terrific answers on this subject.  Just a suggestion.

Hope that helps, even if just a little, Palace.  I am enjoying life as I refuse to let this get the best of me.....and no worries about being a "newbie"... we were all newbies at some point. Trust me... pre-treatment, I had everyone in circles with all of my questions.  It's great to find forums such as this to reach out to others, especially those that have "been there, done that" and can help with answers.

Phyl


--- Quote from: Palace on October 22, 2006, 05:52:17 pm ---Phyl,


Do you think that you had the better luck with the lesser facial pain because, your AN was not huge?

Forgive me if my questions sound redundant as, I'm still a "Newbie."

You sound like you are enjoying life after AN and I'm happy for you.



Regards,



Pal

--- End quote ---

Bena:
What if you had a horrible reaction to decadron and afraid to take it again? i had 2 ER visits weakness sleeplessness wild mood swings many other side effects. even a scary blood sugar spike not even diabetic. i had a bad time weaning off no way I can go back on. doc says thats my only otion. ibuprofin does not help. spending days in bed terrified lately.

PaulW:
Hi Bena,
Steroid prescriptions after radiation is interesting.
In the US steroids particularly decadron are commonly prescribed after radiation to reduce symptoms.

I was treated in Europe where the use of steroids after radiation is not so common.
There are doctors that believe that the use of steroids after radiation does not alter the final outcome.
So while they might provide temporary relief of the symptoms there is no conclusive evidence that it will change your long term outcome.

Steroids, particularly decadron is a very powerful drug with multiple side effects.
In your situation the side effects may outweigh the possible benefits.

I would consult with your doctor, and also ask about steroid use in Europe after radiosurgery or lack of.
Also ask about long term outcomes for institutions that use Steroids or don't use steroids for AN's
I don't think there are any published studies yet unfortunately. But doctors are working on this.

Certainly worth getting further professional medical advice, and I think asking the doctor some hard questions around evidence that steroids improve long term outcomes for AN's would be worth doing.

shilu:
Hi,
I would like to know how you are doing after cyberknife treament. I am also having a .6mm tumor and thinking of cyberknife treatment option. Please advise

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