SRT 15# Novalis Tx linear accelerator 12th of March

[joanna_an]

So I have decided on fractionated radiation. Doctor wants me to do 15 (during 3 weeks). He uses two protocols, #7 and #15. The #7 has the total of 28Gy. Dunno about the #15 one..

We should meet again for an hour before the actual treatment, on the 12th of March. He still wants to discuss with me long term implications from radiation, since I am young. But I have made up my mind already. I just can't get my head around the surgery.. 

I'll keep posting on how I go. Hopefully there will be an uneventful experience.

[joanna_an]

Quick update... I'll do 15 treatments of a total of 44Gy at the center of the tumor and 37.5Gy at the edge or something like that...

First day of treatment was uneventful.. Heard I might get tired towards the end of the treatment...
Anxiety level = nil (Laser eye surgery was way worse)

I'll post if anything out of ordinary happens... Should finish on the 1st of April.

[joanna_an]

Today is my last day. Fatigue mostly. And I do look tired (dark under eyes). But stress doesn't help.
No new symptoms. No hair loss or anything. I did take time off work cause I need to travel 2 hours each way for the treatment.

Anyway.. I solved the mystery why my radiation oncologist didn't want to treat me. He gave me some stats when I first talked with him, saying that if I were to have surgery after radiation I have 50% chances of facial paralysis. Not true, but he tried to lured me off radiation. Apparently he had a girl my age and tumor size and she developed hydrocephalus 4 months after treatment. This he told me when I met him the second time for scheduling my treatment. She had a shunt installed.

I'll keep updates here. My next MRI will be in one year if nothing occurs in the meantime. The doctor said I shouldn't have the MRI at 6 months cause I will see swelling and I will freak out
The growth of the tumor should stop now. So naturally it shouldn't grow. Only swelling caused by treatment it's normal at this point. Which is good, cause my tumor was growing fast.

[ampeep]

Joanna_an,

Good to hear that you made it through the 15 treatments w/ no new symptoms.

This is my 7th week after GK & the only symptom I have is occasional increased tinnitus.

Good luck,
Keith

[Nank]

Sounds like you did great!  Thanks for the updates.

[sandyinwisconsin]

Joanna,

Congratulations.  You're treatment was similar to mine, and we'll have to stay in touch.
I'm 3 months out, and I'm doing fine with the same hearing as before treatment.

Sandy

[joanna_an]

Hi guys, I'll keep updating.. I'm online everyday so it's not hard..

Sandy, yes, I agree, we should stay in touch. I think you're in a better situation than mine tho. Good luck!
I don't have much hearing left in the AN ear  . I hear sounds, but can't make up words. It sucks big time.

[joanna_an]

Just wanted to update everyone that I am 9 days after treatment and I am feeling normal again. Fatigue is pretty much gone. I was out last night until 11pm and didn't feel tired. During treatment I was falling asleep by 10pm.
Tinnitus actually is better now than before treatment. I used to get higher pitch when it was getting louder. I even noticed this with my TV volume. So I was keeping my TV volume low, so I won't get the loud tinnitus, the "eeeeeeeee"... Now, even in loud environments, the tinnitus is a "shhhhhh" that I barely notice. So, at the moment, the only problem is the hearing loss. It does suck, but I really hope that's the only problem that I will ever have to face from this AN.
I don't like to talk to soon, but it's good to keep a diary nevertheless..  I am not going to fully relax until I pass one year problem free and hopefully seeing shrinkage.

[Elliott]

Hello Joanna
Hello from across the Tasman, in New Zealand! I had very similar treatment to you, in Dunedin. 26 zaps with the Linac machine. Finished at the end of January. Before treatment my hearing in AN ear was not too bad, but  now it is hopeless. Not sure how long after treatment it got worse, sort of sneaks up on you. Tinnitus real bad - especially when and after I exercise, but I am stubbornly not giving that up. Like you, I am holding out for the 1 year scan. I have not read of too many for whom the radiation hasn't worked in stopping this stupid thing from growing - so we stay positive. All the best with your "recovery" (is that the right word).
Elliott

[joanna_an]

Hi Elliott,
I'm still good phew! No problems so far and the tinnitus subsided.. It's still there but mild..
Well my doctor told me 95% success rate so yes! there shouldn't be many for whom this didn't work. He had a couple of bad cases, one of hydrocephalus at 4 months after treatment and he did warn me. I'm scared but we could get hydrocephalus from surgery too so it's not like I could have escaped it. My hearing I think it's the same as when I started treatment. It was and is very poor and useless! So we can all sympathise with your case.. We'll just need to cope until there will be a solution to fix this problem. Good luck!