CK starts today

[free2be]

Well, I was ready to cancel last night and this AM. I just talked to the radiation oncologist's nurse practitioner to get clarification on some things. The latest MRI measurements (from Stanford's machine) that I was given by Dr. Chang (in a hurry in the office) are NOT what the radiologist or the radiation oncologist measured more precisesly. The damn thing is larger, not smaller. It's 2 mm in two directions, possibly still margin of error, but on that limit and NOT smaller as I had been thinking. AND the rad oncologist, while I have not been given measurements as yet, indicated the trigeminal nerve and tumor proximity because it is currently not close enough to have major concerns about treating it now, but if it got closer then I could have problems with that. I've heard that can be excruciatingly painful.

I think this clarification has (unfortunately) given me the answer that I sought and the push that I need to move forward and not chance larger issues.

First treatment today 2 PM Pacific time at Stanford.

Connie

[sunfish]

Hope this afternoon goes well for you (I'm sure it will).  Your AN is almost exactly the same size as mine, and in the CPA too.  I had CK last March, and am quite glad I did.  As you know, you could have some minor ups and downs after CK, both due to the tumor and due to the CK.  All in all, I'm not sorry for a minute that I had CK.  I reached the same conclusion you have - a tumor this size is too big to ignore (in my opinion), but still small enough to treat with radiation.

Rest (if possible, if you're on steroids), and know that this procedure can take a few days to a couple weeks to get over entirely.  As we love to say here, "individual results may vary," just like individual reactions to treatments can vary.

If I had it to do over, I'd have taken more advantage of folks who offered support, and had more people stay with me during the days/nights after treatment.  Some folks on this forum were fortunate enough to be able to go sightseeing, etc. after their treatments, but my reactions to the meds were not so good, so I didn't feel too well.

Take care! 

[Jim Scott]

Connie ~

I'm sorry to learn that your AN may be larger than you were led to believe but I think you're doing the best thing as you commence the CK treatment.  Many thoughts and prayers will be with you, today.

Jim

[free2be]

Thanks, Sunfish and Jim. One down, two to go. Honestly, I'm having a bit more discomfort this evening after round one than I expected...but it's not terrible. I didn't think I'd feel anything during or right after the treatments, but I guess that isn't necessarily the case. This too will pass...right?

Round 2, tomorrow 9:30 AM.

Connie

[6pick]

Connie, you're really giving me the confidence to know that pushing my date up was exactly the right thing to do. I'm sorry you're experiencing discomfort, I hope it's only very, very temporary. (no rhyme intended.  )

Best of luck tomorrow for round two, and Friday, final round.

[jerseygirl]

Best of luck with your treatment, Connie! Remember, discomfort is only temporary but the outcome is forever, and your chances of excellent outcome are excellent!


            Eve

[Tumbleweed]

Hi, Connie:

Sorry I haven't been on the forum for around 4 weeks, so I missed your wind-up to CK treatments. I am really relieved that you didn't put off your CK treatments. I, too, second-guessed my decision right up until I got on the CK table; it's only natural to be afraid about such a major procedure. But I am 100% convinced now that CK was the right treatment for me, and a very necessary one, and I only wish I'd had it done sooner, before it destroyed more nerve tissue/function.

Eve is right -- any discomfort you feel is temporary. I had a really strong reaction to CK, but I would do it again in a heartbeat if I had to (which might be the case, considering my small hypoglossal tumor is as yet untreated but has not been growing). Recovery from the treatments and reactions to the tumor dying -- that's all just a waiting game. It's just a matter of time before you'll feel terrific again. For me there is no question -- CyberKnife gave me my life back.

Please let us know how you're doing.

Best wishes,
TW

[ppearl214]

Connie

I've been following along (you KNOW I would ) and hoping by the time you read this, its appropriate for me to write "congrats to the newest 'toastie postie' "   Please keep us updated on how you are doing... don't forget that there is a wealth of info for post-radio patients here on the forums and sending my very best wishes to you!

Well done! (figuratively and actual!)

Phyl

[Tumbleweed]

Well done! (figuratively and actual!)

Phyl

I like that, Phyl!  You might say my medium-sized AN (as we all know, a tumor few people get) was "medium-rare" but it is now "well done" after getting cooked on the CK table. 

Best,
TW

[free2be]

I am cooked, well done, I believe, though I can't "see" it to check. I was dreaming there was a way to look at the tumor ourselves and see what it was doing, anytime we wanted. And, no I didn't have any hard drugs!

We're home. Got home late last night. The trip home was a little more crazy, but we made it. I didn't feel real well, but hard to say from what. I am still fighting cold/sinus infection, which is trying to get into my chest a bit. Would have preferred the procedure without cold and infections, but I guess nothing stops the robot or the radiation. I asked if nuking my cold would kill it, but no such luck on that either.

I slept on the couch most of the day today. I'm having a bit of discomfort on tumor side, but other than fatigue, that may be cold related, I'm okay.

Thanks to all for prayers and well wishes. The next 6 plus months are a bit unnerving, but again...one day at a time.
 
Connie

[Jim Scott]

Connie ~

Congratulations on completing your Cyber Knife treatment(s)!  Rest as needed - and think positive....it can't hurt. 

Jim

[Anomar11]

Connie,

Congratulations on being done!  I'm was also treated at Stanford 11/08 Chang and Gibbs.  It was such a relief, I remember sitting in their chapel grateful for the technology and that I was able to have it.  One day at a time is exactly right, but that's true for all us, radiation or surgery.  Take care,

Mona

[Tisha]

I'm glad it is behind you!  How are you feeling today.  I'm sorry you didn't feel well during the trip, but hopefully you got to do a few things.  Please let us know...

[Lizard]

Congrats toastie postie, I hope your cold/sinus infection gets better and your symptoms continue to be minor.
Take care,
Liz

[free2be]

Thanks, all.

My cold is some better today, thankfully. I am having some discomfort on side of head behind ear and in front along with a little numb feeling and twitch in face. I'm assuming this will be temporary and just reaction to the rad.

Connie