Author Topic: Research Done, Treatment Chosen, Trip Paid, Let's Get It On!  (Read 2845 times)

ash

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On March 8th, I learned that my AN was gowing and my physician recommened radiation which his was Gamma. I was scared  to do anything since I was already deaf in my other ear and was told by two doctors I had only a 60 to 70 chance of saving my hearing with gamma. I decided to wait and do research on treatments. I found doctors that had gamma recommend gamma, doctors with cyberknife recommend cyberknife, doctors with novailis recommend novailis and surgens recommend surgery. Gamma doctors constantly state that gamma has been around the longest with a proven record. With this theory than no new medical treatment could be recomended. Novailis has been around even less than cyberknife. It was recommened by me to contact the best there is and I understand them to be Dr. Chang at Stanford, HEI, and I was given a doctor at Pittsburgh. Dr. Chang answered my email in less than an hour, HEI left a messege a week later saying someone would call me that does cyberknife and gamma and over a week Pitt has not called. All the research I have done and found shows that cyberknife has the best chance of retaining hearing along with tumor control. Cyberknife is usually from 3 to 5 treatments, which gives healthy tissue time to regain strength before next dose. Gamma and cyber is about the same total dose but gamma is all at once. I questioned Dr. Chang about doing 5 lesser strength doses instead of 3 but he said after 3 the hearing does have a better chance but the tumor also begins to have a lesser chance of being controlled. Last night my wife and I booked our week long trip to San Francisco from New jersey for treatment in two weeks with Dr Chang by cyberknife. I want to thank everyone for your support and answering my questions. It is hard to imagine how to make decisions without this website. I was considering when I return posting my experience so others would have an idea of what to expect. Thanks 
Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

BeckyMax

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Re: Research Done, Treatment Chosen, Trip Paid, Let's Get It On!
« Reply #1 on: April 24, 2012, 09:49:43 pm »
I'm sorry that you are having to seek treatment, but glad that you did your research and found the best fit for you.

I'm wait and watch (2 months in) and have been reading up on Proton therapy.  Barnes Hospital in St. Louis is installing a new Cyclotron, the first in the country.  I will consider it if my tumor reaches a stage that treatment is required.  I'm fortunate to live minutes away and ironically received a magazine from Barnes just a few weeks ago.  I normally throw these things away without reading them, but for whatever reason I read it this time. (maybe the front cover headline "precise tumor targeting"did it)

Please do post your experience upon your return.  there are many of us that are following these treatments carefully. 

Safe travels! 

Becky
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13

Suu

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Re: Research Done, Treatment Chosen, Trip Paid, Let's Get It On!
« Reply #2 on: April 25, 2012, 02:14:29 am »
WTG! Ashman

I'll be waiting to read about your experience.  I'm sending all the luck and fondest wishes that I can muster over to you and your family.

See you on the other side.

Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

leapyrtwins

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Re: Research Done, Treatment Chosen, Trip Paid, Let's Get It On!
« Reply #3 on: April 25, 2012, 11:48:59 am »
Good luck!

I hear Dr. Chang is incredible.  You are in great hands!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Research Done, Treatment Chosen, Trip Paid, Let's Get It On!
« Reply #4 on: April 25, 2012, 12:15:33 pm »
Bill ~

Congratulations on your treatment decision.  I think you approached it sensibly and I trust that the outcome will be all that you hope.  Dr. Chang has a sterling reputation so you're off to a good start.  Please try to post and let us know how it went.  Thanks.

Jim
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.