ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Knitting lady on November 30, 2010, 01:20:38 pm
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Hi - I am just completing 6 weeks (30 treatments) of fractionated proton beam treatments at Mass General in Boston. I have a small tumor - can't recall the exact size - and I still have quite good hearing. Don't know how I will be down the road but so far this has been fantastic. There is no pain involved and so far, no side effects. My doctor said I may have gradual hearing loss possibly. The proton beam method seems to me to be the newest and best because it is more focused and does less collateral damage to good tissue. I live in Maine but have a relative I am staying with in Massachusetts or I wouldn't be able to do this. As it is I ride the commuter train for an hour to Boston, then take a 10 minute walk to Mass General, have the treatement (about 20 minutes in all) and then ride the train for an hour back. If I hadn't been able to stay here I would have had to have the surgery. The treatments seemed like a better choice as they are less invasive and had less potential for side effects and the success rate was very good 98% I think. The fractionated (low dose) treatments are preferred because of less damage to good tissue and not such a shock to the tumor. I can't say enough good things about Mass General and my doctor (Jay Loeffler) - both are totally squared away and efficient! I am often a critic of bad service and inefficiency and that hospital and his office are outstanding - run the way you think things should! I've taken the high side and thought of this as my "urban adventure"! Hope this info might help anyone considering fractionated proton beam therapy.
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Congrats on finishing your treatment, very happy things are going well for you.
Liz
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Thank you for this great information. Glad to hear about your positive experience!
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Hi, Knitting lady - and thanks for your positive inaugural post!
I'm pleased to learn about your excellent experience with FSR. I also underwent FSR (in 2006 - in Connecticut) and had a very similar (positive) outcome. I believe that FSR is growing in 'popularity' for treating ANs and only the elongated time-span necessary to accomplish the procedure completely (I had 26 'sessions') hampers FSR from being more commonly used on AN patients.
Jim
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Hi Jim (and others) - glad you also had a positive experience with FSR. Have you had any side effects at all? I sure hope that they do expand the sites and the research because from all I can tell it really is the best answer. Not everyone has the time to be able to do it - I am retired so it wasn't a problem - other than the distance. You'd have to live close to a hospital that offered it to be able to do it if you were working. The actualy treatment doesn't take long so if you were close by it would be do-able. I see that they are building 6 more sites now. Thanks for the response.
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Hi Jim (and others) - glad you also had a positive experience with FSR. Have you had any side effects at all?
No, none at all. I drove myself the 60-mile round trip for each treatment over a 5 week period (weekends off). Within a year, my surgically reduced AN showed necrosis. I'm doing great!
Jim
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Hi Knitting Lady,
You sound just like me a year ago when I went through Proton Beam treatments. I'm fortunate enough to live in MA but I did ride the commuter rail from Grafton to South Station then the red line to the MGH stop. A year later, I'm doing great and have no regret.
I see Dr. Loeffler on 12/15 for my one year follow up MRI. Here's hoping I'll have good news to report...
Laura
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Hi Laura,
Glad to hear you (and Jim in post above) have had no issues to report. Good luck to you on your appointment - I'm sure you'll get good news. Hope everyone has a wonderful Christmas and healthy New Year!
Marylyn
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Hi Jim,
Where can I get more info on this procedure? I want to have as few side effects as possible from this thing. Is this the way to go? I can do the time.
Tom
HiHi Jim (and others) - glad you also had a positive experience with FSR. Have you had any side effects at all?
No, none at all. I drove myself the 60-mile round trip for each treatment over a 5 week period (weekends off). Within a year, my surgically reduced AN showed necrosis. I'm doing great!
Jim
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Hi Marylyn Sounds great. I have met with Dr. Loeffler and am considering Proton at MGH.While my tumor is larger 2.5CM and my hearing gone in my left ear Dr. Loeffler says Proton Treatment (FSR) should stop IT in IT's track.That would be nice.Thanks for sharing your experiances at MGH. Peace Dave J
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Hi Jim,
Where can I get more info on this procedure? I want to have as few side effects as possible from this thing. Is this the way to go? I can do the time.
Tom
Check out this section of the ANA website under 'Radiation' http://www.anausa.org/treatment_options.shtml (http://www.anausa.org/treatment_options.shtml). There is similar information available on the internet and your doctor can best direct you to a radiation oncologist that specializes in this procedure.
FYI: My surgically-reduced AN was approximately 2.8 cm at the time it was irradiated, debulked from 4.5 cm. My neurosurgeon teamed with a radiation oncologist, using 'fresh' CT & MRI scans to 'map' my FSR. They both recommended this approach. The radiation oncologist was very optimistic about the efficacy of the FSR. I'm pleased to report that he was proven totally correct. I can't make medical recommendations to anyone but I can state that FSR worked for me.
Jim
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I just returned from Mass general to discuss my THIRD tumor with Dr Barker and Dr Loeffler. It is about 1 cm. The first was removed in 1987 at House in LA. Thought it was all removed. I discovered it came back in 1996 in the same spot at about 2.5 cm. Dr Barker removed about half of it and then I had 6 weeks of radiation to kill the rest at Mass general with Dr Loeffler. I commuted daily from maine for 6 weeks. Not sure what type of radiation it was. The original tumor has shrunk and in good shape.
So yesterday was my 3 year follow up and what they thought was a scar was a tumor in a different spot from the first. Very rare but not unheard of. Dr Loeffler said i could have one treatment to take care of it. I didn't get into the debate of 6 weeks vs one zap or other option. Crazy.