Post Radio-surgery treatment and fatigue: Important Survey

[ppearl214]

Hi all,

Want to see if all radio-treatment patients can help with a quick survey for Dr. Medbery (who does CK and GK in OKC), who is a volunteer dr on the Cyberknife support board (http://www.cyberknifesupport.org/forum/).

question:

How many of you have run into fatigue post radio-surgery?  This question is open to ALL radio-treatment patients (ie: CK, GK, FSR/Novalis, Proton).
Has the fatigue been severe, temporary, eased over time, etc.  Are there certain times that it enhances (ie: certain situations that would bring it on and enhance it).

If you can please post your replies here, that would be great.  I will have Dr. Medbery check this thread for replies.

Thanks all!
Phyl

[mylump]

Treatment: CK
When: Dec 04
Fatigue: Severe initially, decreasing over time (6-8months), can still occur now
Circumstances: Initially it occurred suddenly, usually at any time of the day,seemingly without any particular trigger.
At present: Still happens if I do too much, ie drive for extended periods of time, work too long, exercise too much (doesn't happen often that one!  lol) Lately I find noise can bring on a sense of tiredness. Stress does trigger it too. Mid to late afternoon and evening are the worst. But, it does not happen often now.
'Solution': Not pushing nor fighting it. Go with it. Short naps of a few minutes help, regardless of where. Watch out and take regular breaks.

(Addition) Like Michael below, I also ahd the 'blues', for quite a while. In fact, the emotional aspect post CK was something I didn't expect. It probably warrants a separate post sometime. I have more details on my blog.

That's it for me. I'll also add that the kind of fatigue I experienced for the first 6-8 months was beyond anything I had experienced before. Very strong and overpowering.

Hope this helps. All the best,
Lorenzo

[ppearl214]

hey Lorenzo! Great to see you here!

Thanks so much for the info! I know it will be helpful to Dr. Medbery.    Hang in there!


If others can also give their inputs, this would be extremely helpful to Dr. M in his investigation of how radio-treatments and fatigue go hand in hand.

Thanks again!
Phyl

[mylump]

Hiya Phil,

I'm just getting use to this 'cross feritlisation' between message boards thing. Good to see you too. Lets hope LOTS of people will reply to the survey, I'm curious to see what other people's experiences are. Not having any ANers around me here and not having personally met any that had CK or GK or any other form of FSR, I'm certainly interested in all this.

Ciao a tutti, Lorenzo

[michael]

I hope I am placing this information as you want it, not sure if there is a form somewhere else, etc.
I am 52 M and had 11MM AN, left side. Gamma Knife 4/2004, initial slight swelling 0-6 months, tumor appears dead and slight reduction in size at 18 month MRI.
I get up most mornings at 5:00 AM and swim/run or lift. This has been my schedule for about last 20 years. Not in great shape but not over weight.
I get "sleepy" after any meal later than breakfast but feel that was my situation before the GK. I really don't feel any more tired. I did go through a period of the "Blues". I couldn't explain it and still have some slight feeling of it now and again.
I feel very fortunate as I feel my life has gone on as it would have. I had some hearing loss before GK and it seems to be the same. The ringing is always there but it is the lack of hearing that "bothers" me. Noisy rooms are a bad place for me now more than before and the sounds in my affected ear appear more metalic and sharp as opposed to a range of sounds.

Hope this helps, let me know if I need to post somewhere else.

Michael

[mellowrama]

Hi Phyl,

I'm post ck almost 3 months now, getting my first mri in a few weeks.

So far, the treatment went great, even the side effects from the tumor seem to be dimishing already, but the success is yet to be seen via Mri, I hope to get results such as you did phyl!  My side effects mainly being numbness/coldness on face...some dizziness.

Regarding fatigue, I've had some as I find I sleep better than usual ;-)  But its really not too obvious...what I've really noticed more is when I am a bit tired, I seem to have a really low tolerence to any BS!    A friend of mine was actually telling me there is a hormonal difference related to having a tumor...perhaps this is all it is as I seem to be pms-ing alot.

I too have found noisy rooms a problem, I get really frustrated with "white noise"...although my hearing (as far as I know) is still perfect. 

melinda

[Dealy]

I am coming up on the 10th of this month being 5 months out from FSR. I still work a 40 hour job except weekends. The first 2 months I did not notice that much. I was told at the hospital where I received treatment that I would be extremely tired. When that did not happen at first I thought they must be kidding. Wrong. My mid-day or late in the evening I get so worn out and fatigued that usually I am in bed by 7 PM and sleep good all night. I too have a very short tolerance when this happens. Just like to be left alone and sleep. Notice more if I push myself at work but also happens on weekends when not working. Ron

[Jim Scott]

FR. 26 treatments: 1 daily for 5 weeks between September 11th and October 16th, following retrosigmoid approach microsurgery performed on June 7th (2006) to remove a 4.5 cm AN tumor.  Approximately 50% of the tumor was removed by surgery.  This partial removal was pre-planned in order to avoid nerve damage.  The surgery was successful.  There was no nerve damage, no complications post-op and my recovery was swift.  Just about all of my pre-op AN symptoms disappeared following surgery.  No ill effects from the low-dose daily radiation treatments, either.  Slight fatigue near the end of the series - but not overwhelming.  I drove myself to and from all 26 treatments (62 mile round-trip, 5 days per week) but always had my spouse present, 'just in case'.   I always slept well at night, even during the radiation series.  Still do.

Statistically, I'm 63 and in general good health.  My recovery following both surgery and radiation was rapid but otherwise unremarkable.  I have no emotional 'issues' connected with my surgery or the radiation treatments other than relief that it's over.  Life goes on.  I expect complete success (no tumor re-growth) and have a very supportive family who are equally optimistic.

Jim[/color]

[Mark]

I was 44 at time of CK treatment and did not experience any noticeable fatigue afterwords. I did experience daily brief episodes of vertigo for the first 30 days and one significant one after six weeks but nothing beyond that. Fairly active lifestyle prior to treatment with a daily cardio workout of either run/ bike/ swim which was resumed several days after last treatment without difficulty. I don't recall any other emotional or mental issues after treatment than I had going in 

Mark

[BevM]

9.5 mm right side, CK October '06; no significant changes since treatment; however, symtoms have ups and downs; ear pressure/pain,tinnitus,balance, fatigue.  I don't think the fatigue is any more intense since treatment; I believe the fatigue for me has more to do with fighting my balance and hearing. Its not only hearing loss but distorted hearing and certain sounds cause pain.  I have noticed in the past few days all of the symtoms are more intense and I attribute it to the fact that I am about 2months post treatment and information indicates symtoms can increase during the first three months post treatment.  The only medication was Steroids just during the days of treatment.  Now I only use ibprophen when absolutely necessary. I am trying not to let this interfere with my normal activities; however, I do manage the effects of the symtoms by limiting time spent in difficult environments that exaserbate the symtoms.

Bev

[ppearl214]

I can't thank you all enough for your inputs on this... Dr. Medbery has informed that he is monitoring this thread and all inputs regarding post-radio fatigue is so appreciated. He's compiling this info and all you note is truly appreciated.

Thanks again!
Phyl

[marystro]

CK: 4 months
Fatigue: sometimes (big fatigue) - it feels like jet lag and I have to hit the sack.  Less now than but still happens when I push my body too much.
Other symptoms:  louder tinnitus, nerve pain (all gone now), numbness (almost gone)
Exercise: have not returned to pre-CK level of daily 30 minute exercise
Emotion: feeling great since CK (relieved!)

Phyl - this is great that you are doing the survey.  Thanks.

[Windsong]

FSR 25 treatment days...

. about 15 min after first treatment,  felt woozy and tired
. fatigue built during rest of treatments, again often descending on me about 1/2 hr after treatment (good thing i had a driver for transportation)
. on occasion if there was a bit of a wait before treatment I went to lie down in nursing station which surprised me as i have never been the type to nap during the day...couldn't fight it, however....
. big fatigue episodes at any time of day hit me about 2 months post fsr, which subsequently have lessened over the months, am about a yr post fsr now, am still not able to maintain level of activity prior to treatment... much like some of you i must pace what i do, and if I overdo it one day the next is pay back day...

I'd like to add that the big fatigue episodes are unlike anything i have experienced at any time prior in my life and I used to be able to pull all nighters which was a different fatigue completely...

Windsong

[vjharris]

Just had my Gamma Knife on Dec. 5. I felt great the next day, almost too much energy. But the day after that WHAM. I slept for nearly 24 hours. My husband made me some soup and I thought it was exhausting to lift the spoon!
That has passed very quickly. It's now Dec. 9 and I feel back to my regular energy level. I just cleaned the house and we're going shopping today.
I'm wondering if it has anything to do with the steroid shot.
Thanks, Phyl!
vjh

[marystro]

The fatigue does get better over time.  Lorenzo, I believe it has nothing to do with long plane rides at least in my case.  I have been traveling quite significantly since CK.  I am talking about around the globe 24 hr flying one way.  I have not found any correlation between long haul flight and fatigue level.  I do find when the interval of being very tired is longer these days.  So I am hoping it's more related to the time since CK.