ANA Discussion Forum

AN Community => AN Community => Topic started by: kayakrguy on June 05, 2009, 01:22:17 pm

Title: 10 year follow up to single session stereotactic radiation.
Post by: kayakrguy 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: elliemae 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: carter on June 05, 2009, 02:13:37 pm
i am glad that life is good!   take care and enjoy the camper
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: Jim Scott 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: ppearl214 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: suboo73 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: Tumbleweed 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: saralynn143 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: wendysig 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: stoneaxe 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
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: Joef 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...
Title: Re: 10 year follow up to single session stereotactic radiation.
Post by: MLB57 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)