Proton Therapy

[ferguson75205]

Hi!

I am a 71 year old male that has been recently diagnosed with a left side AN (.94 cm). I have some mild to moderate loss of hearing in the left ear with some word recognition issues. Hearing in my right ear is relatively normal for my age, with slight hearing loss in the high frequency range. Thus far, I have no balance issues or other notable symptoms. Last month I had an appointment with the UT Southwestern Medical Center Skull Base Program, Dallas, TX and got consults from the following: Peter Roland, MD, Neurotologist, Bruce Mickey, Neurosurgeon, and Lucien Nedzi, MD, Radiation Oncologist. The collective wisdom coming out of this group was for me to wait and watch with serial MRIs. My next MRI is scheduled for October 2010.

Not to borrow trouble, but if my AN shows any growth and/or I have more pronounced symptoms as time passes, then I will opt for more aggressive care. With this in mind, I have been doing some modest research on the internet relative to AN microsurgery and radiation therapy and I have become particularly interested in proton therapy. I communicated with Loma Linda University Medical Center and, to a lesser degree, MD Anderson Medical Center regarding their proton therapy programs. Loma Linda's Case Review Committee has reviewed my MRI and audiograms. It is their opinion that wait and watch is a prudent option at this time. However, they did state that they would accept me as a proton therapy candidate for a six week fractionated regimen if I decided that I wished to go that route.

A quick review of the postings suggests that there has not been much proton therapy discussion, particularly recently. At this point, I am interested in hearing anything and everything from those of you that have had proton therapy for your ANs or are considering it. If any of you have had experiences with Loma Linda or MD Anderson, that would be of special interest. Also, any insurance stories relating to proton therapy would be of interest.

Look forward to hearing from some of you!

Steve

[lholl36233]

Hi Steve,

I had proton radiation at Mass General in Boston for a hemangioma.  I had no problems at all.  My hearing was practically gone in my left ear before but it has greatly improved since.  The doctors are baffled in a good way.  I have a follow up MRI in December.  Can't wait to see what that looks like?  I'd be happy to answer any questions.

Laura

[patt]

Steve ---

Good luck to you with all of your research.  You have found a good forum to come to.

I am doing "Fractionated Stereotactic Radiation"  --- 6 weeks of treatment.   I have completed 9 treatments so far.  Feeling good, other that some days very tired.   My Dr is treating "6" sites to kill the tumor.   I did alot of research and found this to be the treatment for me.  I lost all of my hearing in my RT ear  -- put on steroids --- most of my hearing has come back.    Dr felt that doing the "FSR", he would be able to save most of the hearing that I have.

I don't understand what "proton radiation" is.    Could you explain.     Is it the same as what I am having??

Good luck to you ---
Patt from Minnesota

[ferguson75205]

Hi Laura and Patt!

Thanks so much for your postings!

I have replied to each of you in a little more detail via e-mails.

All the best -

Steve

[Jim Scott]

Hello and welcome, Steve ~

I'll offer you my experience with FSR (fractionated stereotactic radiosurgery) that I underwent as a planned follow-up to AN debulking surgery for a 4.5 cm tumor in 2006, which also cut off the tumor's blood supply.  I was 63 years old and in good health at the time.  Unfortunately, due to my procrastination, the growing tumor had destroyed my hearing nerve and I was, then and now, deaf in one ear (SSD-Single Sided Deaf).  The surgery went splendidly with no real complications and reduced my large AN to approximately 2.5 cm.  After a planned 90 day 'rest period', my neurosurgeon teamed with a radiation oncologist to 'map' my FSR treatments, intended to, as the doctors explained it, 'destroy the remaining tumor's DNA'.  In effect, kill it.  I underwent 26 separate FSR sessions with no problems.  They were approximately 40 minutes each.  I had no nausea or fatigue issues and drove myself to and from each session (a 60-mile round trip) each day.  No sessions were scheduled on weekends.  Subsequent MRI scans indicated necrosis (tumor cell death) and some mild shrinkage  Four years later, I feel great and consider the AN dead.  Having met my deductible with the prior surgery, my Blue Cross medical insurance coverage paid for the treatments in full.   I never received a bill.

My FSR treatment was performed at the cancer center affiliated with the hospital where I had my AN surgery, in New Haven, Connecticut, on a LINAC (Linear Accelerator).  I received approximately 1 gy per day for a total of 27 gy.  My radiation oncologist stated that this was the lowest 'dose' possible that he considered effective.  Apparently, he was correct. 

The Loma Linda University Medical Center has a good reputation.   Let's hope the tumor remains dormant.  However, I believe that having a 'plan B', should observation, (which we call 'watch-and-wait' ) show tumor growth, is prudent.  I also hope the information I've provided is of some use to you.  Feel free to PM or e-mail me if you have questions - or simply post them on this forum.  Other AN patients have undergone similar radiation treatment and one hopes they'll respond to your query.   

Jim

[elliemae]

Hi, Steve
After watching and waiting for about 2 1/2 years, I also had the 6-week(30 session) proton therapy at Mass General in Boston (Nov/Dec '08). First year MRI in 12/09 was "stable", and I am happy with that!  Next followup is June 2011 (18 months).
I also had few problems with the therapy, other than the expected fatigue that began around week 3.  And, I do have an occasional wonky-head / dizzy feeling that began about 4 months after therapy. Felt a little tipsy  .  I think that may partly be due to allergies, as that coincided with spring 09, and I noticed the same thing again this year. I took Advil, and that helps me when I get that feeling. No need for steroids, and hopefully that will continue!

The radio-oncologist told me I could still "watch & wait" as my AN appeared to be very slow-growing, but when I was ready for therapy, he recommended the proton therapy due to the probable involvement of my facial nerve.  I had facial spasms for a few years that were/are probably related to the AN (they couldn't tell from MRIs exactly), and Dr thought this particular radiation therapy would be more protective of the facial nerve and other surrounding areas. (I had already lost hearing in that ear, so that wasn't an issue in my decision.)  And, I am very happy to say that those spasms have markedly decreased.  I still get them, but nothing like before.

And no insurance problems either!  I am in an HMO (HMO Blue-New England - BCBS), and everything except my co-pays for the weekly visits with the Doctor during the therapy was covered.

Hope this helps!  PM me if you'd like more details!
Elaine

[ferguson75205]

Hi Jim and Elaine!

I appreciate your taking the time to introduce yourselves and share some of your AN journey with me.

Jim, I have reviewed some of the other Discussion Forums and have noted some of your postings. I like your thoughtful, balanced, positive responses. You are encouraging and affirming where possible. Your good work should be encouraged.

Elaine, your experience with proton therapy is of particular interest to me. Sounds like you are pleased with your care and outcome thus far.

As I get into this more, I suspect that I will have additional questions with which both of you can help. I will look forward to that time.

Best -

Steve

[ppearl214]

Hi Steve and welcome. Well, although I am a radiation patient (post-Cyberknife -- CK), I wanted to chime in with a "welcome"

I know Elaine well (*blows kisses and sends dark chocolate), I also know of "TSL" (Theresa, MAJOR hugglez dear! ) who was also treated with Proton at Mass General (to my knowledge, there are only 3 Proton centers in the USA - Loma Linda, MGH and Houston).  Both Elaine and Theresa are doing well with it.  There is a gentleman here (Stoneaxe - Bob) that had Proton at MGH, but it didn't seem to work and he had surgery (after the fact) at MGH for the tumor removal.  I have had the honor of meeting all 3 in person and they are all doing fine.

In researching radiation options (ie: "doing your homework"), please check re: "total" accuracy of targeted beams as well as any out of pocket expenses (Proton is a VERY expensive radiation option vs. other radiation options such as Cyberknife, Gammaknife, Trilogy, etc)... if you are on Medicare and have other insurance suppliments, pls research first what will be covered for "stereotactic radiation therapy".... Proton, Cyberknife, etc all fall under this category for AN treatment options.

Since you are awaiting the next round of MRI's... I can share this based on info provided by others... In "older" adults, for some reason, many AN's seems to slow down in growth... and for head MRI's... there is a "total margin of error" of +/-2mm when they read the films (ie: due to different MRI machine technologies, types/angles of the MRI "slices" when they do the test, etc. )  So, if your AN is currently .94mm.... and the  next MRI shows (as an example) 10.2mm, please keep in mind that it falls within the margin of error and doesn't necessarily mean its growing.

So, that is my 2 cents as you have already been given terrific support in this thread.

again, welcome to you.... pls keep us posted on how you are doing.

Phyl

[ferguson75205]

Hi Phyl!

It was good to hear from you!

Your comments on "margin of error" regarding measuring tumor growth were of particular interest to me. I will keep that in mind when I get my next MRI in October.

Conceptually, proton therapy is appealing to me as what appears to be a state of the art radiation therapy option. However, it is, as you point out, potentially expensive, at least in short term cost. Arguably, total life cycle costs may be less compared to other treatment options. In any event, I need to research the insurance side very carefully.

For your information as well as others, here is the status on proton therapy center operations and development according to the National Association for Proton Therapy:

Operating Proton Centers:

James M. Slater, M.D. Proton Treatment and Research Center at Loma Linda University Medical Center
Francis H. Burr Proton Center at Mass. General Hospital
Midwest Proton Radiotherapy Institute at Indiana University
The University of Florida Proton Therapy Institute
M.D. Anderson Cancer Center's Proton Center, Houston
ProCure Proton Therapy Center, Oklahoma City, located at the INTEGRIS Cancer Campus
The Roberts Proton Therapy Center at University of Pennsylvania Health System

Proton Centers under Construction:

Hampton University Proton Therapy Institute
Northern Illinois University Proton Therapy Center
CDH Proton Therapy Center, a ProCure Center, Warrenville, Illinois
ProCure Proton Therapy Center in partnership with Princeton Radiation Oncology Group and CentraState Healthcare System, Somerset, N.J.

Proton Centers in Development:

The Proton Therapy Center, Knoxville, in partnership with the University of Tennessee Medical Center
South Florida Proton Center

I guess when you add up the limited number of proton therapy centers in business, at least to-date, the likely challenge of obtaining insurance coverage for proton therapy care, and the relatively low incidence of acoustic neuromas in our society, it's not surprising  to me to see limited information on proton therapy care/treatment outcomes. My gut tells me that, overtime, proton therapy will become an even more viable, practical, desirable option, but we're not there yet.

Will keep you and all posted on my little odyssey.

Best -

Steve

[jerseyboy]

Hi Phyl and Steve,
Thank you for your posts.  (Phyl - we met at the ANA Chicago symposium.)  I've been Watch and Wait for over one year, but my symptoms of a wonky head are worsening, so I'm thinking about treatment.  CK is possibly tops on my list, but, is there any way I can compare proton therapy to CK, regardless of the cost differential?  As I'm 64 I'd like to avoid surgery, but answers of course are elusive regardless of research.  I am seeing Dr. Choe of the Mount Sinai School of Medicine next week.  Even though he's a surgeon, I've seen him before, think he's terrific, and value his advice.
jerseyboy 

[ferguson75205]

Hi Jerseyboy!

Have replied to your post via e-mail.

Best -

Steve