Cyberknife Journey

[okiesandy]

Mary,

I think the post treatment effects are different for each individual. I had a mild sunburn feeling on one cheek. A warm feeling scalp for a few days. Also had very mild and very short pricking pains over my eye brow. My facial numbness got a little worse before getting better and now almost gone. I did get kind of hot flashes on one side of my face and my face would feel warmer on the treated side. That's all gone now.

I don't know if I was under so much stress before treatment or just euphoric to have the treatment over. For the first week or two I had a lot of energy. Then went through a period of fatigue and flu like symptoms for a while. The Brain Fog feeling I had before treatment and after seems to be a lot better.

As far as my Ck treatment is concerned I am doing better than expected. I still have imbalance and always will. It is not bad and does not impact me live much. I practice looking stright ahead when I walk and stress my balance by turning and moving in different ways that cause me difficulty. The past few weeks it have been very hot here and I found my balance was worse. Your are going to laught at this next one. I was wearing flip flops and flat slides. This morning I put on a shoe with a 2 inch heel and the balance improved greatly. I thought that was strange so I put on the flip flops and balance was off again. Go figure.

Nothing in this life is prefect and neither is CK. It just seems to be the better of some options for some of us. I have never had the swelling post CK. Why would I? I have had so many steroids pumped down me for my AIED that nothing would swell. If I could get that under control as easily as "Ivan the Terrible Tumor", I would be a happy camper. Mary, after 7 months I hardly ever think of the tumor. I am so much more concerned with the loss of all hearing from the AIED that the tumor is out of my thoughts most of the time.

I can say I have never missed a day of work because of the CK treatment. The only time I stress is about a week before the next MRI. FYI this week I am crawling up and down a ladder at home, stripping old wall paper off and texturing and painting walls after work. Now how is that for normal routine?

Hugs and blessings,

Sandy

[CC]

Hey all it appears I've entered this one right at the end. 

Mary, I had CK with Chang and Soltys last October and can't speak highly enough of them.  My AN was pushing 3cm and I was largely asymptomatic.  Now approaching the 10 month mark (wow how time flies) the alien in my head (as we refer to it) is "liquifying".  Yes that's the medical term the radiologist used.  In real terms the sucker's dying real fast so we're celebrating.

I know others have posted at length about side effects etc but I remember that for about 6-8 weeks after CK I was exhausted.  I've since spoken with other people who've had various forms of radiation and this seems consistent with the body processing it.  What helped were some enzymes called Vitalzym (purchased off the net) and good plain old fashioned exercise.  30 mins a day on the bike got me breathing hard, got my heart pumping and my body rid of all those things I didn't want in there.  Apparently exercise directly rids your body of radiation.  Other than that I've had some occasional oddities like the odd pain in the head, super sensitive hearing, etc.  But I understand that it's different for everyone.  So hang in there.  I'll try and start visiting this site again as there doesn't seem to be anyone here in DC other than me who has had CK! 

Welcome to the once exclusive, but thankfully ever growing club of CK patients.
CC

[ppearl214]

Mary,

You rawk!!!!!!!!!!!!!   I'm so so so proud of you!!!!!!!!!!!!!!!!!!!! Hang in there!!!!!!!!!!!!!!!

nuff said!

xoxoxoxoxoxo

[marystro]

Hey everybody,

I met another fellow ANer from San Diego for lunch today for the first time.  It turned out that John and I have been working within a mile from each other for the last few years.  It's a small world afterall.  John had CK at Stanford with Dr. Adler in 2004 and is doing really really great.  No more symptoms, no more side effects, nada!  Go, John!!  Rub off all these good kama on me please 
** John - Hope you don't mind I share this with everyone .  We need positive energy and thoughts all the time.***

John and I are wondering if there are any other AN fellows in San Diego who have gone through CK.  So far, we only know about John and myself...  It was terrific to be able to share experience in person.  I immediately gave John a BIG hug from all of us.  Feel like we are family already 

Mary