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Author Topic: 10 year follow up to single session stereotactic radiation.  (Read 3941 times)

kayakrguy

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10 year follow up to single session stereotactic radiation.
« on: June 05, 2009, 01:22:17 pm »
Hello everyone,

I had single session Proton Beam radiation treatment at the old Harvard cyclotron  (retrofitted for medical use--since dismantled and a new proton-beam facility is in place at Mass General Hospital) 10 years ago this May for a left-sided 1cm AN>

I have some of the usual issues: occasional facial pain, mild spasm with sensitivity to bright sunlight and cold wind;  I have lost all hearing in the left ear; and my balance is not the best.  When we go mtn hiking, I have to use a walking stick, especially coming down!;  when I use the treadmill, I have to hold on so that I don't 'drift' and get hung up on the side rail.  I had the good fortune to avoid serious facial paralysis but my smile is a bit lopsided.

The good news is that I have been having MRI follow-ups every two years.  My Dr said that there is no need to continue with that because the tumor shows no sign of growing or being active.  Hurrah!

I had the good fortune to be able to retire within a year after treatment.  Since I had always had fairly profound hearing loss since birth the loss of hearing in my left ear really compromised my job performance.

Since retiring, I have built a Teardrop trailer (The Snuggle Inn) and with it Nancy, my wife, and I have been to Florida for a month, Newfoundland for three weeks and last summer we toured the West of the USA for 3 months.  Lots of fun, lots of great people and adventures along the way.

The ANA is a wonderful organization and gathers into its shelter lots of very brave and courageous people.

Blessings to all,

Jim Woods
« Last Edit: June 05, 2009, 01:25:59 pm by kayakrguy »
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elliemae

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #1 on: June 05, 2009, 02:12:19 pm »
Hi, Jim!
Thank you so much for sharing your experience.  Altho "results may vary, etc" (see Stoneaxe/Bob...), this is some very good news for those of us who have followed in your footsteps!  I had the proton therapy (multi-session) at MGH last Nov/Dec.  Dr thought that was better for my conditions than the one-shot radiosurgery.

Who is your Dr?

Hope all continues well with you!
Elaine
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carter

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #2 on: June 05, 2009, 02:13:37 pm »
i am glad that life is good!   take care and enjoy the camper
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Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

Jim Scott

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #3 on: June 05, 2009, 02:31:38 pm »
Hi there, Jim!

Congratulations on - and thanks so much for - your positive and realistic 10-year update.  Very useful - and encouraging.  I hope you'll continue to enjoy your retirement.  Stop by here any time you like!  :D

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.

ppearl214

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #4 on: June 05, 2009, 02:43:20 pm »
Hi Jim W and good to have you here.  thank you SO very much for this update. It is extremely valuable info for those researching treatment options and to get a 10 yr update is fantastic!  Continued wellness wishes to you and next time we have our brunch in Worcester (hopefully, this October), please keep an eye open in "AN Community" for the updates. Would love to have you and Nancy join us.

Stay well!
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"

suboo73

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #5 on: June 06, 2009, 07:53:09 am »
Hi Jim!  From someone in W & W, considering CK radiation treatment, i do appreciate your 10 year (!) update!!!

Enjoy your retirement!

Sincerely,
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

Tumbleweed

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #6 on: June 06, 2009, 12:07:53 pm »
Congrats on your good report and thanks for posting the results! We don't get many 10-year reports on this forum, so it's very valuable to hear of your experiences.

Best wishes from one toasty postie to another,
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

saralynn143

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #7 on: June 06, 2009, 03:49:49 pm »
Congratulations on your ten-year milestone. I would love to see pics of your trailer and travel adventure. If you ever get a chance to post some, let us know.

Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

wendysig

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #8 on: June 08, 2009, 03:28:08 pm »
Jim -

Congratulations on your 10th ANniversary.  It's great to hear such a positive after everything you've been through.  Kep on keeping on!

Best wishes,
Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

stoneaxe

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #9 on: June 12, 2009, 08:34:13 am »
Hi Jim,

Great to hear you're doing well and enjoying life. One of these days I want to build a teardrop.

As elliemae mentioned, I'm one of the very few (very very few) for whom the proton beam didn't work. I was treated 5 years ago and I'm headed in Wednesday for surgery.

From your name you obviously like the water. You might try standup paddleboarding as therapy for your balance issues. Its done wonders for me and a great workout as well. Just make sure you try a big wide board...12' x 30" or so.

Keep having fun,

Bob
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Joef

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #10 on: June 12, 2009, 08:50:12 am »
Did someone say Kayak ?  ;D

I just got a new one ... hopefully the weather will clear up this weekend !

Sounds like your doing well ... the balance is not the same ... but I believe with pratice and work .. it can be as good as before .. just not the same...
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4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

MLB57

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Re: 10 year follow up to single session stereotactic radiation.
« Reply #11 on: June 13, 2009, 07:22:02 am »
 ;D Hi Jim,

What wonderful news for you and I might add for all of us--especially those like myself who have more recently had radiation and still aren't to the point we need no more MRIs-- that is such encouraging news!!

Best wishes to you and you family!! ;D

Mary from MA  (one of Phyls' Maxwell's Brunch bunch)
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1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!
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