Planning for post-cyberknife side effects

[rrsandstrom]

In trying to make some plans for our family for the next few months (i.e., spring break, summer vacation), I'm trying to get some information about potential side effects post cyberknife (for my husband) and their possible timing. 

For instance, I'm wondering how soon after the radiation we might expect any side effects.  Might side effects start in the first week, month, two, three or more months after the treatment?  Also, I heard from the doctor that pre-treatment symptoms can predict post-treatment symptoms.  Does the fact that my husband does not have headache or balance issues now, pre-radiation, mean that he is less likely to have post radiation headaches and balance issues?   Finally, it seems like I've read on these boards about people being off work after radiation.    The doctors haven't indicated that they'd expect my husband to have to take any time off work whatsoever and we're not planning on it.  I know everyone reacts differently and I have read different stories on this board.  Just hoping to get some feedback all in one place here in one thread.  Thanks for your help.

[arizonajack]

Sorry, but there is no way to predict or plan for post CK side effects because the experiences are all over the map and many (like me) have no side effects at all.

This is one of those things where you do what you gotta do and take what comes when it comes.

[sandyinwisconsin]

I had 27 treatments of radiation and just finished January 9, 2014.  I had NO side effects, possibly a little more ringing which comes and goes.

I had no extra hearing, balance, or hair loss.  I do have a long way to go though before my next MRI in July. 

Sandy

[Echo]

I don't think anyone can give you a better answer than Jack did. 

We are all different and react differently to the treatment.  I was told I should be able to go back to work the day after my Gamma Knife.  Well the day after I reacted to the local anesthetic used to attach the head frame and my eyelids were so swollen it took me 3 days with ice packs to get the swelling down.  At that point I developed a nasty sinus infection and ended up home for 2 weeks to recover and then 1 more week just to get some additional rest.  I was exhausted.   On the list of side effects to watch for that I was sent home with, the swollen eyes were on the bottom of the list and the least likely to occur.  I did good otherwise, so you just never know.

Cathie

[rupert]

Nothing better than a vacation to cure the AN blues.

[TSS]

I had CK last July 1 with no significant side effects thus far.   I think you have to keep your life going as planned.

[Echo]

I was WRONG, Rupert gave the best answer!  Lets start packing! 

Cathie.

[terisandler]

I'm in for the vacation with you all but only if we go someplace WARM!   Seriously, though, I had CK in early May.  About October I began to notice balance issues, dizziness, and some pain (maybe 3-4 on  a pain scale of 1-10).  I really believe I have had these issues (except for the ear pain) to some extent for years, so maybe they were just exacerbated by the radiation.  Or not.  Now, at almost 9 months post CK these maybe/maybe not side effects are less noticeable.  Of course, this is just my experience, others may have different stories t tell.

[arizonajack]

I'm in for the vacation with you all but only if we go someplace WARM!   

Phoenix is nice this time of year.

[BeckyMax]

I guess I'm in the minority here.  I had 3 sessions on CK in December, each one week apart, which is different than most docs do.   On about day 3 following my first session I developed a migraine that lasted several days.   By day 7 (my next session), it was pretty much resolved.   Session 3 was uneventful.   Fatigue throughout the month, but not unmanageable.  headache was minimal after the first week. 

January 1, i noticed balance issues starting, and let's say that the whole month of January has been less than fun.   Vertigo/balance problems were attributed to possible swelling of the tumor.  I started Decadron about 10 days ago, vertigo reduced to dizziness, but my cognitive function has been a mess.    doc is now tapering me off the decadron, says it is like a nuclear bomb for my memory.   I started a slow taper and it will take 3 weeks to come off completely.  In the meantime, I have a hard time putting together a thought, vision seems as if I am drunk (no double vision, just can't seem to focus my mind on what I am actually seeing, I feel like I am looking at life through one of those magic eye books, where you divert your gaze in order to see the images popping out at you. )  I float down the road on a boat when I drive, can't imagine passing a field sobriety test if I were to get pulled over.   

I read read read everything I could get my hands on, and was watch and wait for 2 years before ultimately deciding on CK, but this reality is not at all what I planned for.    My advice....make no plans.....go with the flow and expect anything.

I have balance testing scheduled for 2/10/14.   I suspect this will lead to vestibular therapy.  i'm hoping for some relief.    I don't regret my decision, I was started to have facial issues.  I just hope that I am able to get back to a functional self again.   I'm an accountant and this year end has been less than fun.

Becky

[john1455]

I just completed a 3 session CK treatment at Stanford (started 3/19/2014 and finished 3/21/2014) and an informational sheet given to me titled "AFTER CYBERKNIFE: What Can I Expect?" contains the following:

Immediate Side Effects are not likely to occur. However, some patients may experience minimal side effects that go away within the first week or two after treatment.

Side Effects May Vary. The side effects related to Cyberknife treatment vary from patient to patient. Side effects depend on a number of factors such as your diagnosis, the site of your body that was treated, and your underlying medical problems.

Possible Side Effects
The most common side effects are headaches - a mild headache may occur within a few hours of Cyberknife treatment.
Nausea
Fatigue - not common; if it develops it will lessen within a short period of time.


After a week, the only side effects I have experienced is a very slight worsening of my pre treatment symptoms (disequilibrium, dizziness, tinnitus).

[joanna_an]

I am currently having 15 treatments with the Linac Novalis. I have two left.
I don't know if it's related but I have flu symptoms.
And last night i got sick two times, at 4 and 6 in the morning.. It could be just some flu caused by my immune system playing up. I developed flu symptoms after laser eye surgery as well. Guess I am a bit of a prima doña.