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Acoustic Neuroma Patient Shares His Loma Linda Proton Treatment Experience
Posted first in the Acoustic Neuroma Association Forum on March 4, 2011
I am undergoing proton therapy treatments at Loma Linda University Medical Center, Loma Linda, CA. It's a 28 treatment regimen (three more treatments to go). Very impressed with the program and staff! Their mission - Wholeness of Man - is a true "walk the talk" actualization. They don't just care for the disease, but rather care for the person! - Mind, body and spirit focus.
The treatments are a quick (15 minute) uneventful experience, Monday through Friday. Tuesday through Thursday evenings there are proton therapy social/educational support group activities (about 160 patients [mostly with prostate cancer] and, in some cases their spouses, take part). During the week you are encouraged to take advantage of their Drayson Fitness Center at no charge. It's the most impressive fitness center I've ever seen - swimming pools, super gym(s), tennis, handball/racket ball, weights and aerobics, track(s), etc. There are also opportunities for nutritional counseling and learning more about other lifestyle changes. Many of the patients get together for golf on Wed. mornings and tennis on Tuesday and Thursday mornings. All of the above, along with the wonderful tourist attractions of Southern California, makes for what some of us are calling a "proton vacation"!
Most importantly, the fractionated proton therapy, with its potent and precise Bragg peak characteristics (Google "Bragg peak" for details) gives me a good chance of stopping the tumor growth in it's tracks with the least amount of healthy tissue damage. I understand that time will tell as to my particular outcome; that is, I will be looking for no tumor growth and no side effects over the next six months to two years approximately. Dr. Lilia Loredo, Radiation Oncologist, has treated over 100 acoustic neuroma patients (most AN proton experience in country to my knowledge) and has had only one patient that had to return for recurrent growth. Presently, I have some moderate loss of hearing in my left ear and a few word recognition challenges. Just prior to treatment, I also started experiencing some slight equilibrium issues (motion related only). Dr. Laredo is quite optimistic about my keeping my remaining hearing and thinks the equilibrium issue may resolve itself in time or, at a minimum not get any worse.
I really think that proton therapy will increasingly be considered a treatment option for AN patients. In fact, in my view, it could become the standard of care for this particular disease. For what it is worth, Mayo Clinic has just announced that they will be developing proton therapy centers for their Rochester, MN and Scottsdale, AZ clinics. Also, UCSD Medical Center and Scripps Clinic in San Diego have announced that they will be developing proton therapy centers. ProCure, an investor owned healthcare company, will also be aggressively developing, marketing and operating proton therapy center joint ventures with major medical center providers around the country.
Will keep you posted on my progress.
72 years old; left side AN (.94 cm) diagnosed with MRI 4/10/10; moderate hearing loss and speech recognition issue; Watch & Wait; October 2010 MRI revealed tumor growth (now 1.2 cm); slight equilibrium issue (motion related). Started proton therapy at LLUMC on 1/28/2011; finished 3/9/2011
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