fatigue - GK vs CK

[goinbatty]

I've seen post radiosurgery fatigue mentioned frequently.  I was wondering if fatigue is worse with GK or CK or for the most part is it the same.  Also from what I understand steroids are given with GK.  Are steroids utilized with CK routinely also?

[aardvark]

My CK was 2 years ago at Stanford.  The routine included a steroid pill (Decadron)  immediately following each day's treatment.  As far as I'm aware, that's still the norm, but perhaps more recent post-CKers will have updated info about current protocols.


aa

[ppearl214]

hey goinbatty,

It seems that Fatigue and all forms of brain tumors (malignant and benign) tend to go hand in hand, regardless if pre-treatment, post-treatment or type of treatment protocol.  There is a thread here re: fatigue that may be of interest. Within the thread, there is a link to a brochure (a .pdf file) written by Dr. Peter Black and Nancy Conn-Levin regarding all forms of brain tumors and fatigue, pre- and post-treatment that is a good read.  Please see this thread disucssion and the link to the brochure....

http://anausa.org/forum/index.php?topic=3380.0

To open the brochure, you need Adobe Acrobat/Reader. If you do not have it on your computer, you can go to www.adobe.com and download a free trial copy of the software/application.

In my research, dispensing of steriods for post treatment (ie: edema, etc) is based on each location's protocols.  Some use it, some don't.  Decadron (brand name) seems to be the post-treatment anti-inflammatory of primary choice. I was on it as my treatment team uses it post treatment.  I know of some that were only on it for 3 days, some longer, some not at all... so, discuss it with your treatment team to see if they do recommend it or not....

Phyl

[gordy]

i had gamma about a month and a half ago and i was given no steroids. felt fine after a few days. no real fatigue until a couple weeks ago. not sure if it was from the an or over worked.

[goinbatty]

Thanks for the brochure Phyl.  Very interesting.  I'm leaning toward CK but am concerned about keeping up with work, family, etc.  The center I'm considering is about 4 hrs away.  One other question.  Immediately after CK, are you allowed to drive? 

[sgerrard]

I asked the question about driving in another post. While some answers said no problem, others indicated that it varies by person, and some caution would be advised. I would guess that a four hour drive each way would be too much to do every day during treatment, if that's what you mean. But I would think you could drive home the day after the last treatment, or something like that.

Steve

[goinbatty]

That's what I was considering, driving home after the last treatment.  Just hope there's a local hotel that gives good rates for patients there for treatment.  Will have to check on that issue too.  Thanks for your input. 

[jb]

I just finished five days of CK a couple of weeks ago and haven't noticed any increased fatigue issues so far - still having mostly good days along with a few bad days.  I was slightly more off-balance after the first two treatments, but things improved after that.  It was probably more due to anxiety and not sleeping well than the treatment itself.  I didn't drive, but commuted by train and bus and a lot of walking each day without any problem.  I was told that I could drive if I didn't take Ativan (optional sedative) before the treatments, but I was in DC and not really comfortable driving there under normal circumstances.  I did drive about 400 miles the day after my treatments were complete and was pretty exhausted after that.  I was never given decadron, but they did put me on prednisone midway through the treatments due to some slight hearing changes (lowered pitch) in the affected ear.

[sgerrard]

Hi jb,

  I am interested in hearing more about your AN and treatment, and your CK experience. I noticed you said in another post that you had 50% hearing loss in the AN side and are hoping that the remaining hearing is preserved. That is the same situation I am in, and the same reason I am going for CK.   

When you said they put you on decadron midway through the treatments, does that mean they were testing your hearing every day? Is that usually a part of the treatment process when hearing preservation is a goal?  Also, out of curiosity, I think you said you had 5 x 5 Gy. I am scheduled for 3 x 6 Gy, and I wonder what size your AN is, or how do they decide number of days and total dose?

It sounds like your post treatment is going well, I hope I have that experience tool, and I hope it continues for you.

Steve

[jb]

Hi Steve,

I was actually listening to a recorded phone message each evening after treatment to monitor my hearing level.  I noticed that after the second treatment that the pitch I was hearing with my treated ear was significantly lower than what I was hearing with my good ear.  Before treatments it was the same pitch, just muffled in the AN ear.  I've had two previous episodes of 'sudden hearing loss' in the AN ear (one a few years before AN diagnosis, one earlier this year), ultimately recovering to the present level of 50% speech recognition.  I took prednisone for the hearing loss earlier this year, so they decided to put me on that again instead of Decadron.  Everything still sounds slightly lower in my AN ear now, two weeks after CK, but I can hear well enough to carry on a phone conversation (using AN ear) most of the time.

My AN is about 2 cm diameter.  I don't remember the IAC extension measurement, but I think it is a little less than expected for the overall size of my tumor.  The docs said it was a little unusual to be concerned with preserving hearing with an AN this size, because hearing has typically been lost already.  This was a consideration in prescribing the 5 Gy/day x 5 day protocol, but I honestly don't understand that process at all.  I had some concern if the dose was sufficient to kill the AN, but the radiation doc pointed out that the tumor center would be getting 25% "hotter" (more radiation) than the AN margin.  He felt confident in the numbers based on previous experience and published data, so we'll see.

Anyway, so far, so good.  I wish you well with your treatments.

[sgerrard]

Thanks jb.
I don't understand the the dose/day process either, I was just curious. Perhaps size enters into it as well.
It is good to hear that you came out of treatment with the hearing still there, hopefully it will stay that way, only time will tell.
I am now just 1 week away, and then I will be in the same boat as you. Hopefully it floats.
Steve

[linnilue]

Fatigue is a "seven letter word."  I had linac and almost 3 years later, I am still tired alot of the time.  The brain works in this way to make you slow down and give it a rest, literally.  I feel tired before I get up.  There are some days when I can go all day but that is not the  norm, I need rest periods, not naps, rests.  Good luck.   

[goinbatty]

Thanks to all for your posts.  And thank jb for the email.  I will be relieved when I have this, whatever that ends up being, scheduled.  Will keep you all updated.

Sandra