A question about after radiation

[shells]

Hello  Everyone
        I had cyberknife treatment on August 3rd so I am one month into this. It to my understanding that signs/symptoms generally show 2-6 months after treatment but I have experienced symptoms within 3 days after and they seem to alternate from day to day one day it is  facial numbness that seems to move about on one side of my face an side ,it is lite but present from cheek to lip , next day its gone and balance is off , next day a headache , next day  maybe some nausea , it seems to repeat its self it hasn't kept me from working I returned to work 2 days after last treatment . My question is is it normal to have the symptoms so quickly after treatment ?My An is 1.2 received treatment at Stanford.

[Vivian B.]

Hi Shells,

I had GK in June 2010. My symptoms following that were so unpredictable. The first couple of days, I felt fine, then the nausea started, the numbness I always had, the fullness seemed to have subsided. This went on for the first couple of months. After that my symptoms were on and off until about two months ago when I started experiencing fullness again in the ear area, pain and off balance. I too have kept working but the discomfort wears me down. My Neurologist says that he can't explain the symptoms, my ENT says it's not the tumor or the ear, he had me check my jaw which turns out it's dislocated. I have an appt. next week with my Dentist. I think that overall, symptoms will come and go whether you had surgery or GK. Although, I have kept myself pretty functional so far, It has not been a picnic. The symptoms, when they persists could be very tiring. I would not worry in terms of what is happening in the tumor, I would just look at it as part of the journey. Some good days, some bad days.

Vivian

[TJ]

Shells,

To answer your question, YES!  The symptoms do change over time.  At some point the hope is that they will soften, and you will be able to have a normal life.  I had CK 10 months ago for a 1 CM on the right side.  Over the last ten months the main symptom that has gotten a little worse is the tinnitus on that side.  I am hoping it will lighten up a bit, but only time will tell.

You have not had enough time to get past the fatigue, it took me several months for that.  But I understand the Stanford is great at responding to patients.  So if you are concerned give them a call.

Good Luck

TJ

[ppearl214]

My question is is it normal to have the symptoms so quickly after treatment ?My An is 1.2 received treatment at Stanford.

First, congrats on being a "toastie postie!" (ie: radiated post-treatment).

Please remember that "individual results may vary...." as with any medical treatment for any medical ailment (ie: brain tumors, cancer treatments, etc).  Everyone's body reacts differently.

With that said, now that I am over 5 yrs post-Cyberknife, I can share that in the first 9 mos, for me.... I had some enhanced symptoms, ie: ear fullness, enhanced tinnitus, etc.  The radiation treating teams will tell you that this is not unusual yet, not common either.  Some experience them, some don't.  Many find that after the first year, things do tend to ease up, which is the ultimate hope.  I know of some, like myself, that things did ease up... and I know of some that they haven't.  It can truly be a hit or miss as everyone's body is going to react in its own way.

Suggestion is to keep your CK team (all follow ups should be with the "neuro"-oncologist as anything that occurs post-treat is usually neurologic related since the neuro-onc has been part of your treatment plan and knows it and your case) updated of any situation you may feel may not be right. They need to be well-informed of any potential changes so they can evaluate the situation and if needed, recommend necessary steps to stay on top of the situation. They may prescribe meds, such as steroids, or prescribe vestibular exercises, etc. 

Just my 2 cents..... I had coffee this am.

Hang in there!
Phyl

[PaulW]

I had a number of symptoms before CK treatment.
Balance problems, hearing, tinnitus, lethargy, poor concentration.

Within hours after the treatment I had worse symptoms
Problems were at there worst for me in the first two weeks.
I then got a cycle of tinnitus, hearing reduction, balance problems and fatigue.
It seemed like I never got all of the problems at once, but I seemed to have something nearly all the time.
With each cycle which lasted about a week, everything slowly improved.
The cycles gradually got longer and the symptoms reduced.
I remained at work the entire time.
I found the first 2 months the most problematic, followed by month 5.
All of these symptoms were annoying, but hardly dibilitating.
After that things got better.

I am now at month 13 and feel absolutely normal nearly all the time.
Hearing remains good, and is better than pre treatment levels.

There is light at the end of the tunnel and its not a train!

[shells]

   Thank you everyone for your replys they have been very helpful ! I just didnt understand why they started so early  I was waiting for the 2 to 6 month wait that the dr. talked about . Looks like each day will be a adventure!     
                                Shells

[Tumbleweed]

Immediately after getting CK, I felt like I'd been hit by a train... no waiting 2 to 6 months for me! I was profoundly fatigued, short of breath, balance was about 15% worse (subjectively) and my skull felt numb for two days. It took me two months to lose the debilitating fatigue and six months to have my balance and vigor come roaring back. At about 3-1/2 to 4 months post-CK (can't remember exactly when), I had an episode of hyperacusis, with attendant hearing loss, that lasted about a week. Strange enough, my tinnitus got reduced by about 90% right after treatment and has since stayed subdued.

So, yeah, all bets are off. Everyone responds differently.

The good news is that I feel much better now. My balance is about 80% improved. Energy level feels great (virtually normal). I did lose some hearing on my AN side (around 15 dB or so), but still have useful hearing on that side.

It does get better. You just have to wait it out. And stay as healthy as you possibly can. It makes a huge difference if you're exercising, eating well (avoid sugar and very oily foods) and, especially, if you're getting enough sleep and staying hydrated. You want ample flow of good clean blood feeding those traumatized cranial nerves and keeping them happy. Walk, drink water, eat vitamin-rich vegies and omega-3-rich fish, keep your blood sugar stable. It all makes a BIG difference. You'll be feeling better soon.

Best wishes,
TW