Author Topic: Post CK swelling-need support/info  (Read 18301 times)

Lorenzo

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Re: Post CK swelling-need support/info
« Reply #30 on: June 11, 2008, 06:20:42 am »
All the best Tumbleweed, you're in great hands with Dr Chang and Co.!!
Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #31 on: June 12, 2008, 12:02:27 am »
Thanks for your encouragement and assurances, Lorenzo. BTW, did you choose Dr. Hancock to serve as radiation oncologist (RO) on your CK team, or did Dr. Chang? Were you happy with Dr. Hancock? I don't have an RO assigned yet. Any feedback/info/opinions would be deeply appreciated.

Many thanks,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Lorenzo

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Re: Post CK swelling-need support/info
« Reply #32 on: June 12, 2008, 02:15:29 am »
Morning Tumbleweed,

Dr Hancock turned up when i met Dr Chang for the first consult when i got to California. Steve & Steve they introduced themselves as. Funny. I liked their attitude. I wonder if he's still there, I don't see him mention in any post on the forum here. I only met him once I think. Whatever, I found both very professional, good sense of humour (even when I did a jig during the 'walk-one-foot-in-front-of-the-other' bit. That convinced them of my compensated balance! lol) and very calming in a comforting sort of way.

When are you going for CK? Have you been to Stanford before?

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #33 on: June 12, 2008, 01:14:53 pm »
Hi, Lorenzo:

According to Stanford's website listing of doctors, Dr. Hancock is still there at Stanford.

I am tentatively scheduled to get treated at Stanford the week beginning July 7th. Waiting for pre-cert from my insurance company and to find out if the doctors can meet with me on a Monday for check-in/consultation (they usually don't do this on Mondays but try to accommodate out-of-towners like me). Scheduled to get zapped on July 9, 10, and 11.

So... if you only saw Dr. Hancock that one time, who planned and executed the radiation delivery?

Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Lorenzo

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Re: Post CK swelling-need support/info
« Reply #34 on: June 12, 2008, 01:28:45 pm »
Hi Tumbleweed,

He planned it. Thinking about it now, he was there a couple of times to check things, but mostly it was the other team members that took care of the zapping and so on. Larry being one of them! They were all nice and really efficient. I actually did see Dr Hancock again at the end of treatment, before they sent me on my way to enjoy the rest of the stay in CA. I had a great time when there, mostly. Didn't like the steroids at all, but loved Stanford and the campus and bookstore there. Spent LOTS of time there, and at Cantor Arts Center too, eating lunch! I ate like a horse, pesky steroids!

If you want to ask me anything, please do. Send me a message or post here.  :)

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

sgerrard

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Re: Post CK swelling-need support/info
« Reply #35 on: June 12, 2008, 08:50:21 pm »
I never had the sense that I got to pick a radiation oncologist; Dr. Gibbs was there for my first consult, and in and out throughout the week. As Lorenzo said, the techs do much of the work, although Gibbs and Chang got together on the treatment planning on Tuesday. My consult was on a Monday, with treatment Wed - Fri, so it isn't that unusual a schedule.

Have a good trip.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Lorenzo

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Re: Post CK swelling-need support/info
« Reply #36 on: June 12, 2008, 10:29:58 pm »
Same for me Steve, never got the impression i could pick the rads oncologist. Same schedule too.  Arrived in CA on a Friday, consult with them, MRI, CT and hearing tests on Monday, mask fitting on Tuesday, zapping Wed, Thu and Fri. I think this is the normal schedule, or at least it seemed to be at the time.
Ciao
Lorenzo  :)
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #37 on: June 13, 2008, 12:49:39 am »
Hey, Steve and Lorenzo:

Did it bother you at all that you couldn't pick your radiation oncologist (RO)? My feeling is that the person with the most experience is most likely to do the best job. For something so important, I'd like to have a say. Am I wrong? Does the choice of RO not matter much?

When you guys got your pre-treatment MRI on Monday, did the doctors tell you whether the tumor looked the same or grew? I'm hoping for spontaneous regression in the next 3 weeks! ;D But seriously, I'd like to know whether the thing grew anymore in the two months it'll be since my last MRI. Did the doctors show you the MRI?

Thanks for your replies, guys,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Lorenzo

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Re: Post CK swelling-need support/info
« Reply #38 on: June 13, 2008, 01:04:38 am »
HI Tumbleweed,

It didn't even cross my mind. As far as i was concerned, the entire team at Stanford had the experience I needed / wanted. I mean, it is the original CK place, right? Anyway, I wasn't going to start wondering about Dr Chang's choice of radiation oncologist, no need nor reason to! I trust them all!.

When I had my MRI I think I was told what size it was. I know it had grown since my previous MRI. Can't remember if I saw the MRI, probably not as they were working with it. I did get copies of the films afterwards.

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

teasely

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Re: Post CK swelling-need support/info
« Reply #39 on: June 13, 2008, 09:26:08 am »
Tumbleweed, I was treated at Stanford by Dr. Chang and Dr. Soltys.  Didn't get to choose radiation oncologist Soltys, but everyone was kind and caring throughout.  You're in good hands.

Mark

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Re: Post CK swelling-need support/info
« Reply #40 on: June 13, 2008, 06:45:10 pm »
"marystro" from San Diego , who used to post here more often, also had Dr. Soltys along with Dr.Chang. She was very happy with him as well

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #41 on: June 13, 2008, 08:35:33 pm »
Thanks, Lorenzo, Teasely and Mark, for your replies.

I found out a couple hours ago that Dr. Gibbs will be my RO. I'm happy about that, as she's the co-director of the CK program at Stanford. Dr. Chang also gave Drs. Hancock and Soltys the thumbs up.

My insurance pre-cert also came through today, so the wheels are now rolling. I'm nervous but, at this point, ready and eager to get it done and not have it hanging over my head anymore.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

sgerrard

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Re: Post CK swelling-need support/info
« Reply #42 on: June 13, 2008, 09:13:23 pm »
I'm nervous but, at this point, ready and eager to get it done and not have it hanging over my head anymore.

You will, of course, have the Cyberknife arm itself hanging over your head for a few hours during that week. Best to keep your eyes closed and pay no attention. It is big but quiet, like a calm and slightly curious alien taking a close look at you.  :D

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #43 on: June 13, 2008, 10:20:40 pm »
You will, of course, have the Cyberknife arm itself hanging over your head for a few hours during that week. Best to keep your eyes closed and pay no attention. It is big but quiet, like a calm and slightly curious alien taking a close look at you.  :D

Steve

Aha. So... a "close encounter" with radiation, huh? ;D

Good to know it's quiet. The jackhammer noises inside an MRI unit are a bit unnerving. And I always thought the distorted, pulsing tone an MRI makes sounds a bit like the beginning of a Led Zepellin guitar riff. Anyone who's had an MRI lately and is a Zep fan knows what I mean!

I'm-a-headed to Stanford for a whole lotta love...

Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Lorenzo

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Re: Post CK swelling-need support/info
« Reply #44 on: June 14, 2008, 12:44:54 am »
Speaking of Led Zep, bring your favourite music to play while being zapped. Talking Heads would be good. You can listen to your own choice while encountering the alien. I was spared Christmas muzak as I had my own jazz CDs to listen to. CK is very quiet!

Oh, and eat lots and lots of vegetables and prunes, those steroids set me back for a good while because I didn't know!

Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.