Author Topic: Another Newbie  (Read 11065 times)

pjb

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Re: Another Newbie
« Reply #15 on: November 06, 2010, 08:16:37 am »
I am new to the discussions about radiation and not sure if I really want to go that route just yet... but as far as them leaving the room the technicians do that for all types of X-Rays, CT Scans etc., so I do not thing that is a cause for concern it is just a common practice they deal with it on a daily basis and safety for them also as it is their profession.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

JLR

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Re: Another Newbie
« Reply #16 on: November 06, 2010, 08:39:58 am »
Hi Phyl, Thanks so much for clearing the air! If there was even a chance of being zapped in the chest - Accuray would be out of business. I'm having the CK in a few short weeks and feeling confident of its success.  Thanks again Phyl, Joan

moe

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Re: Another Newbie
« Reply #17 on: November 06, 2010, 11:03:09 am »
Just another welcome to the newbies~ Shorebird and JLR.
I required surgery because of brainstem involvement >:( but am glad to hear that you two don't have to go the surgery route.
Let us know how things go, and how your symptoms respond to the treatments.
 :) Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Tumbleweed

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Re: Another Newbie
« Reply #18 on: November 06, 2010, 11:11:28 am »
Phyl, thanks for the report on your experience with challenging the CK robot!  ;D All joking aside, it's really good to know that the irradiation ceases if/when the patient moves.

Joan, congratulations on scheduling your CK treatments. You are on your way toward improved health. Recommended reading: A couple years ago, I posted some useful info about CyberKnife and my experience with the treatments, here: http://anausa.org/forum/index.php?topic=6910.0

Best wishes to all,
TW
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

JLR

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Re: Another Newbie
« Reply #19 on: November 06, 2010, 11:59:39 am »
Thanks TW for your experiences with CK.  Very interesting. Only 32 min. each session..I can do that...And so glad you are doing so well. So my doctor has me taking Decadron prior to each treatment..if I were to take a valium as well, wouldn't I be like Jeckle & Hyde? Thanks again for all the feedback. JLR
« Last Edit: November 06, 2010, 06:14:36 pm by JLR »

Shorebird

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Re: Another Newbie
« Reply #20 on: November 07, 2010, 06:44:02 am »
Hi Phyl, thanks for your note about your "intentional movement" and the CK robot stopping.  I'm sorry if I caused some unintentional panic among the future CK patients!  I was only passing on the information that I received from Dr. Noren and Dr. Heilman.  For those of us who are choosing to go the radiation route, whether fractioned or not, I think it's a great choice and I think we'll come through it just fine.

On another note, would a few people who have had their AN treated by radiation chime in about their immediate (and not so immediate) side effects?  I'm very curious about your experiences.

Thank you and Happy Sunday!
Cindy

Tumbleweed

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Re: Another Newbie
« Reply #21 on: November 07, 2010, 08:20:35 pm »

On another note, would a few people who have had their AN treated by radiation chime in about their immediate (and not so immediate) side effects?  I'm very curious about your experiences.
Cindy

Hi, Cindy:

Someone recently PM'd me the same question, so I'll just paste part of my reply here (while being careful to protect their identity):
Immediately after getting CK, my balance symptoms got about 15 to 20% worse. This lasted for about six months. Then, very quickly, my balance started to improve. It is actually much better now than it was before getting CK, in fact better than it has been in around 10 years, although I still have mild disequilibrium. It's pretty unusual, from what I understand, to actually have balance improve compared to pre-treatment function. You're more likely to have your balance symptoms worsen a bit after treatment, but then have it return to pre-treatment level of symptoms several months after treatment. I've been lucky. My tinnitus also dramatically improved immediately after getting CK, which is an even more unusual outcome.

Unfortunately, I had an episode where I had hyperacusis and lost about 10 dB of midrange hearing on my AN side about 4-1/2 months after treatment. The hyperacusis went away in about a week or so (I think taking large doses of natural vitamin E helped), but the hearing loss didn't reverse. Later on, during months 6-12, I lost another 10 dB of hearing in my midrange frequencies on my AN side, but my hearing rebounded in the bass frequencies by about 10-15 dB.

One other thing: I suffered very severe exhaustion for a couple months after getting CK. This was unusual, as most people have only mild to somewhat pronounced fatigue for a couple weeks, and some people don't feel fatigued at all after treatment. Because I have had very dramatic tumor necrosis followed by shrinking, I believe my intense reaction (fatigue) was due to the tumor reacting very strongly and quickly to the treatment. That was a really good thing in the long run but was difficult to take in the short term.

I am totally, 100% happy that I had CK. Doctors said I would surely have been deaf [on my AN side] following surgical resection; instead, most of my hearing is preserved. My balance is dramatically improved and my tinnitus greatly reduced. CK has been a lifesaver for me.

Best wishes,
TW
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

6pick

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Re: Another Newbie
« Reply #22 on: November 09, 2010, 06:52:50 pm »

On another note, would a few people who have had their AN treated by radiation chime in about their immediate (and not so immediate) side effects?  I'm very curious about your experiences.

Thank you and Happy Sunday!
Cindy

Hi Cindy, I had CK during the week October 11-15 so that's about 3 1/2 weeks ago. The only side effects I've experienced so far have been a slight increase in my pre-treatment symptoms as we expected would happen. These were about a 5-10% increase in both tinnitus and disequilibrium. That's it. I've played handball 3 or 4 times since then (just to illustrate that my balance issue isn't bad enough to make my game worse) and, in all other ways, I have gotten back to what is a normal life for me.

By the way, I was lightly secured to the table with a 12" or so wide belt that I think had lead in it. Actually, I hope it had lead in it.

Ok, and for the record, I'm not the Mark about whom Phyl is referring, but I'm going to take some liberty here (since I am a toastie postie - or is it postie toastie?) and add my name to the dope slap list!  :D
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Tumbleweed

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Re: Another Newbie
« Reply #23 on: November 09, 2010, 11:04:22 pm »

 I'm going to take some liberty here (since I am a toastie postie - or is it postie toastie?)  :D

I believe the, ahem, correct title is toastie postie. I.e., someone who is post-treatment who has been toasted with radiation. Postie is the noun (us). Toastie is the adjective which conveys the inner suntan we all have.  ;D

Best wishes,
TW
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

ppearl214

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Re: Another Newbie
« Reply #24 on: November 10, 2010, 05:24:45 am »
Cooked, post-treatment. 

*raises hand*

Definate toastie postie here! :)

Phyl


 I'm going to take some liberty here (since I am a toastie postie - or is it postie toastie?)  :D

I believe the, ahem, correct title is toastie postie. I.e., someone who is post-treatment who has been toasted with radiation. Postie is the noun (us). Toastie is the adjective which conveys the inner suntan we all have.  ;D

Best wishes,
TW
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

JLR

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Re: Another Newbie
« Reply #25 on: November 10, 2010, 05:33:41 am »
Hi All, Recently on the forum there was a post about important questions to ask prior to the CK...i.e. who to call if there is a complication, when to take the meds etc etc  I was wondering if anyone could pass this thread to me. I'm thinking it was on this forum or perhaps the CK one.  I just dont recall... I can't always blame the AN for my forgetfulness..I eat too much tuna and I think the mercury has finally caught up with me  :D   JLR

6pick

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Re: Another Newbie
« Reply #26 on: November 10, 2010, 10:14:07 am »
Okay, I don't want to derail this thread and I can make an argument for either toastie postie or the reverse, so I'll go with popular consensus, or open a new thread.
Toastie postie is it.

But seriously, folks,

Hiya, JLR, try this link:

http://anausa.org/forum/index.php?topic=12217.0

Mark
« Last Edit: November 10, 2010, 10:20:56 am by 6pick »
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

JLR

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Re: Another Newbie
« Reply #27 on: November 10, 2010, 02:16:00 pm »
Thanks Mark! I appreciate the quick response. JLR

6pick

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Re: Another Newbie
« Reply #28 on: November 10, 2010, 06:15:27 pm »
We're here to serve !  :D
5/21/10 diagnosis: Left side AN: size 25X17; tinnitus with variable volume, garbled word recognition, disequilibrium.

10/11/10 CK treatment@Stanford; Drs. Chang, Gibbs, Lieberson size 25 x 20 x 15 mm

4/24/12 size 23 X 20 X 15 no hearing change

Shorebird

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Re: Another Newbie
« Reply #29 on: November 11, 2010, 04:51:08 pm »
Thanks for the feedback, everyone!  Having this forum is such a gift and I'm so thankful to have found you all.

I guess I'm about as mentally prepared as I can be for GK on 11/19.  Let the real battle begin!

Best Wishes,
Cindy

 


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