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Author Topic: CK date set at BIDMC  (Read 6984 times)

hevreh

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CK date set at BIDMC
« on: June 23, 2009, 01:16:50 pm »
Again thank you to ALL whose objective support aided me in making my decision. July 8th is the date for planning with CT and MRIs. July 16th I go on the table. Anyone up for dancing in Boston? I actually don't know how to expect to feel during the week of procedures but am confident to be in good hands.
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eab

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Re: CK date set at BIDMC
« Reply #1 on: June 23, 2009, 01:43:12 pm »
Good luck!  I hope you are able to squeeze in some fun during your stay.

Beth
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Left side AN 2.5x1.7x1.5cm, limited hearing loss, limited tin., good balance
GK 7/6/09 Hoag Hospital; MRIs at 2, 6 & 12 months show no change in tumor size - hearing etc. same as before GK.

Jim Scott

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Re: CK date set at BIDMC
« Reply #2 on: June 23, 2009, 04:17:02 pm »
Hevre ~

Congratulations on your decision to have your CyberKnife treatment at the famed Beth Israel Deaconess Medical Center affiliated with Harvard Medical School in Boston.  I know you did copious research and have reached this often difficult decision based on careful investigation.  I'm certain you have full confidence in the doctors and facility, so you're in good hands and can look forward to a successful procedure and a positive outcome.  Many will be thinking of and praying for you, especially on July 16th.

I've added your treatment date (July 16th) to our AN Treatment Calendar.    http://my.calendars.net/an_treatments/d16/07/2009?authenticate=&display=M&style=B.  Feel free to edit.

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Vivian B.

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Re: CK date set at BIDMC
« Reply #3 on: June 23, 2009, 05:56:31 pm »
Hi Hevreh,

I'm glad to hear everything is all set. Good luck and keep us posted.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

sgerrard

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Re: CK date set at BIDMC
« Reply #4 on: June 23, 2009, 07:34:55 pm »
Quote from: hevreh on June 23, 2009, 01:16:50 pm
I actually don't know how to expect to feel during the week of procedures but am confident to be in good hands.

Hi Hevreh,

Congratulations on getting your date. I took a one week trip to Stanford CA to do my CK. I was able to drive 30 miles back and forth to the hospital each day, and do ordinary "visiting a friend in the city" things in the evenings and on the weekend. I didn't drink a lot of alcohol, but I did have a little, and no high energy activities, but a short hike on the weekend. I was taking one steroid a day for the three days of actual treatment. I was back at work the following Monday.

Hope it all goes well!

Steve
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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.

ppearl214

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Re: CK date set at BIDMC
« Reply #5 on: June 23, 2009, 08:41:39 pm »
I know you are in good hands at BIMDC... and so does Sheryl and so does Colorlady.... as we can all attest.  I'm glad you have made your decision on what to do and I'll dance with you in Boston.  :)

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

Sheryl

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Re: CK date set at BIDMC
« Reply #6 on: June 24, 2009, 08:22:09 pm »
Yes - you are in wonderful hands - great facility, great doctors and nurses. 
Keep in touch - we'll be thinking of you,
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Tumbleweed

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Re: CK date set at BIDMC
« Reply #7 on: June 26, 2009, 10:30:08 am »
Quote from: hevreh on June 23, 2009, 01:16:50 pm
I actually don't know how to expect to feel during the week of procedures but am confident to be in good hands.

You've made an excellent treatment choice in having CK, Hevreh. Here is some information you may find helpful regarding your upcoming treatments:
http://anausa.org/forum/index.php?topic=6910.0

Best wishes,
TW
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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

Anna7

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Re: CK date set at BIDMC
« Reply #8 on: June 27, 2009, 12:27:57 am »
The last time I posted was during my ck treatment approx 14 months ago. Just want to wish you the best results possible.  I'm so glad I chose radiation over surgery.  You'll do great.  I experienced episodes of dizziness after each morning treatment but still was able to go to work in the afternoon.  There was also some post treatment ear fullness with intermittent aches and sharp pains for a short period post treatment.  Fortunately. I never required any meds outside of over the counter headache meds.  I felt some nausea and headaches after my first two sessions (I did 5 total) but then it subsided.  I still have episodes of fullness when my pulse is very pronounced in my an ear.  Make sure the medical staff situate your head properly during the pre-treatment CT scan.  I'm not much of a writer, just wanted to let you know that the ana family is rooting for you.
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elliemae

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Re: CK date set at BIDMC
« Reply #9 on: June 29, 2009, 12:11:45 pm »
Good luck, Hevreh, on your upcoming CK!  Next week! That's a pretty quick turn-around for you once you made your decision.  You'll soon be joining us postie-toasties (did I say that right, Phyl?)

Hoping all goes well

Elaine
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ppearl214

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Re: CK date set at BIDMC
« Reply #10 on: June 30, 2009, 06:59:37 am »
Quote from: elliemae on June 29, 2009, 12:11:45 pm
You'll soon be joining us postie-toasties (did I say that right, Phyl?)

toastie-postie :)  xoxox
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Tumbleweed

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Re: CK date set at BIDMC
« Reply #11 on: June 30, 2009, 11:59:32 pm »
Yeah, very important to get our jargon right.  ;D With consistent use, we might get it into Webster's dictionary some day.

 :) ,
TW
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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: CK date set at BIDMC
« Reply #12 on: July 01, 2009, 06:34:44 am »
Quote from: Tumbleweed on June 30, 2009, 11:59:32 pm
Yeah, very important to get our jargon right.  ;D With consistent use, we might get it into Webster's dictionary some day.

 :) ,
TW

got my docs understanding the term "wonky head".... think it also needs to go into Webster's :)

hevreh, good luck at next week's preplanning/scanning... and let us know how you are doing!  As you can see, we are all here to help!
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Tumbleweed

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Re: CK date set at BIDMC
« Reply #13 on: July 02, 2009, 01:38:54 am »
Phyl, that's a scholarly observation on your part.  And don't forget the adjective form, "wonkyheaded." And the adverb form, "wonkyheadedly," as in "He wonkeyheadedly headed for the head, when wonk!, he hit his head and instantly became more wonkyheaded." ;D

TW
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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

suboo73

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Re: CK date set at BIDMC
« Reply #14 on: July 02, 2009, 04:40:45 am »
Hi Hevreh!  Best wishes on your upcoming treatment! 
(I know how hard the decision is - i am floating in W & W for awhile longer...)

But, if i had to decide today, i would definitely do CK. 
I am looking forward to your updates as a toastie postie!   ;D

Take care.
Sue

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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W
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