If you are considering Proton Therapy, feel free to contact us.

[KeepSmiling]

We are very pleased to report that my husband recently finished Proton Therapy treatment. He had 28 sessions of Proton Therapy at the Massachusetts General Hospital for an acoustic neuroma that was 1.5 cm.

His diminished hearing and ringing in the ears was first detected by an Ear Nose Throat Specialist in 2009. The specialist had said that he should be re-evaluated in a year. We were in the midst of job transitions and unfortunately my husband did not return to the medical specialist. It was a shame. It was unfortunate that the specialist did not immediately order an MRI.

In late November 2012 he noticed he was deaf in his ear. He saw a new otolayrngologist, who ordered an MRI. The MRI revealed the acoustic neuroma. 

 During the proton therapy treatment he had no side effects. After the treatment, which ended August 22, 2013, he had no side effects. When the next MRI is taken, a year from now, we will determine whether there is a change of the status of the tumor. Once we have more MRI data, we will certainly share it.

He did not regain any hearing from the deaf ear after the proton therapy treatment. 

He had some chronic hives before the Proton Treatment, which we believed could have been caused by a month long regimen of Prednisone, although doctors are not sure about it.  Before the MRI results revealed the acoustic neuroma, prednisone was prescribed by the Ear Nose and Throat Specialist. It was taken as prescribed (in very high dosages) for almost an entire month. There were adverse reactions with the Prednisone.  During the proton therapy treatment the hives were almost nonexistent- they were very rare. Now that we are back home he gets hives every 4 days or so, which he treats with Allegra. We hope and believe that the chronic hives will go away after time elapses. (( Side note- In hindsight we should have asked for an immediate MRI - and we should have waited to take the heavy dosage of  Prednisone for a month. ))

We have photos of the Proton Therapy Treatment for anyone who would like to view the procedures involved. Please send  a private message with your request.

We could also share advice about lodging near the Francis Burr Proton Center for Massachusetts General.

To repeat- We are thrilled that the treatment with Proton Therapy did not cause any side effects. He continued to work from a virtual office the entire time. There was absolutely no fatigue. He was able to go to the gym every day and to strenuously work out, in addition to walking all over Boston to get everywhere (at a much faster pace than mine).  His energy levels were exceptional. He participated in teleconferences and analyzed mathematical data with no cognitive deficits at all. There was no vertigo.  His appetite was excellent. There was no change in how things tasted. He did not feel weak. He did not feel dizzy. His tinnitus was not any worse. After his 28th treatment he carried very heavy luggage down four flights of steep stairs, on a hot day. Then we took two planes home. He worked the next day.

There were many children who were patients at the Proton Center. The children came from all over the country to get Proton Therapy, which is a form of radiation that spares the normal tissue and zaps the tumor.

Massachusetts General was uniquely successful in getting authorization from our commercial insurer to cover the Proton Therapy. Massachusetts General staff members understood what was required to get approval. The letter of Medical Necessity written by Dr. Loeffler was submitted immediately by MGH at the very beginning-and the approval by Insurance was prompt.  We had been denied coverage many times at other Proton Therapy Centers. Specifically, one  Proton Therapy Center was not successful in getting authorization from our Insurer, even after we had traveled for a consultation, wasting our money on airfare and his valuable vacation time off work. After we MGH was successful in getting authorization for us, we called up the previous Proton Therapy Center and gave them advice about how they should change their process, so they could also be successful in the future. We hope that we made a difference for their future Acoustic Neuroma patients.

Please note:  Some Proton Therapy Centers reviewed his MRI and referred us to seek other treatments. In general, they seemed to favor Gamma Knife. We guessed that they lacked appropriate experience with Proton Therapy treatment for acoustic neuromas. This was just our guess.

We are thankful to the talented team at Massachusetts General. He was under the excellent care of Dr. Jay Loeffler. As our future MRI's become available, we hope to share them as concrete evidence of our success with Dr. Jay  Loeffler and with Proton Therapy treatment.

We offer our heartfelt thanks for all the support form everyone at this wonderful forum. We spoke to many of you by phone and you offered insights with sincerity and kindness. We got e-mails from you. We listened to your stories. We thank you! We are in your debt- We offer you deep gratitude. You touched our lives.

Signing off now- but please don't  forget- to keep smiling! Take care!

[terisandler]

So glad the proton therapy seems to have worked so well.  I had 5 CK sessions in May and my first follow up MRI indicates my AN is stable.  I, too, seemed to have no side effects.  Now I have some but they are not awful - some dizziness, unsteadiness, headaches, and a little nausea.  People who had GK have reported it takes a few months for side effects to present.  Perhaps it is different with the Proton Therapy - hopefully so - but please don't be too discouraged if some develop down the road. 

[KeepSmiling]

Thanks for the reply. Wishing you and all the AN patients the very best.

[KeepSmiling]

It has been 2 months since the Proton Therapy ended. All continues to be very well. He feels completely well. He has not missed work once. He is engaged at athleticism on a daily basis. No issues.  Does not feel unwell in any way. Proton Therapy seemed to be a perfect solution, thus far.

Each Saturday and sometimes Sunday, he rides his bike about 40-50 miles in our very hot climate. Twice he felt fatigue when he had reached the mile marker 46... and he had headaches after he returned home, for which he took ibuprofen and then felt fine. He was keeping pace with Triathletes in his bike group, so of course he had fatigue... I get tired just thinking of it.

Whether this contributes to his good outcome after the proton therapy I do not know... I might as well mention it, in case it plays some part:  We have been using a Vitamix high performance blender about a  couple times a week and make juice out of various ingredients including blueberries, bananas, celery, zucchini,  carrots, strawberries, and watermelon. We consumed fantastic "smoothies" before/during/after the proton therapy 6 week treatment. Maybe it is nothing at all..who knows.

The biggest issue he has is that he wishes that the doc did not prescribe a super dose of Prednisone prior to the MRI test, when the doc was guessing that the hearing loss was a result of a virus (it was not). That darn Prednisone caused an adverse reaction while he took it as was prescribed,for a whole month. Now he gets itchy hives once a week, although he successfully uses a very small amount of Allegra to combat the hives. He uses a pill cutter and only takes a fraction of an Allegra pill.

Suggestion: We are encouraged by the results so far-It could be worthwhile to study and consider Proton Therapy. As more time elapses we will continue to provide feedback. Best to all of you.

[theshawn65]

I've heard the steriods can stay in your system for up to 6 months or more. Like any other meds it depends on the persons reaction to it and time frames taken so hopefully your husbands hives will slowly but surely subside over the next few months.

[KeepSmiling]

5 months have gone by since my husband's last proton beam treatment for his acoustic neuroma at Massachusetts General Hospital under the care of Dr. Jay Loeffler and his expert team.

I think he had  only two  headaches since his last Proton therapy treatment for his Vestibular Schwannoma.  Just to clarify- it is February 1 2014 right now and from the end of August 2013 until now he only had two headaches. When he had the headaches he simply took a dose of tylenol and he was fine.

He had a minor case of the shingles around December and after a few weeks it went away. It is unknown what caused my husband's shingles, but all his siblings previously had the shingles, his mother previously had the shingles, and so did our son. 

In August he'll get an MRI and we will know whether any growth has occurred in the tumor.

He's felt energetic. He's riding his bicycle as usual and working out at the gym. His job has gone well and it involves focus and detail and complex math.

On the other hand, his adverse reaction to the heavy dose of Prednisone for one month prior to the Acoustic Neuroma diagnosis was a big bother- it caused him to get hives for some time, over 6 months.  He got the hives before he had Proton Therapy, so we know that the Proton Therapy was not the root cause.  Luckily, he followed orders from a good Allergy medical specialist and he took Allegra when he had the hives (chronic urticaria). He did not need the entire Allegra pill but he simply took 1/4 of a pill or less and it helped resolve the itchiness.

So far, we have no reason to regret the Proton Therapy.  We are very encouraged by his outcome. We'll continue to update you as time elapses.

We are thankful to the wonderful ANA Members who also had Proton Therapy and posted here at this forum and then talked to us on the phone. One very kind ANA member actually had us over for dinner when my husband was undergoing his treatment in Boston, which was not at all close to where we live.  We are also grateful to the ANA members who shared information about non Proton Therapy treatments. This support meant so much to us.  Thank you.

Proton Therapy seems to have been a good option for us, and if you are considering it, we'd be open to talking and sharing. We have photos of the actual treatment, so that way you could visualize the process. It would be nice to "pay forward" some of the kindness that was extended to us. We'd be eager to help.

Whatever treatment you select- we wish you the very best. Take care!

[KeepSmiling]

My husband lost all hearing in his left ear in late November 2012. In December 2012 an MRI with contrast revealed a 1.5 cm acoustic neuroma. We searched for answers and found nothing but conflicting advice from numerous specialist doctors.

We read many scientific studies. We talked to many individuals who had many different treatments. We focused on finding a treatment that you could trust to be used on a child. It was important that my husband continue work to pay for the college years, which have arrived. It was important that he did not lose his balance or facial control. He is extremely active.  It was extremely important that there be no brain fog or cognitive issues.  He is very educated and in a very technical field.

Finally we settled on Proton Therapy. We researched the scientific studies on Proton Therapy and checked out who authored the scientific studies. We approached the co-authors of the studies (http://www.ncbi.nlm.nih.gov) and sent them his MRI. (Strangely enough, many of the Proton Therapy Centers had doctors who reviewed his MRI and called us and pushed us to go with Gamma Knife, and said it would be the correct treatment. )

After we selected one Proton Therapy center in California, which was the location of one of the authors of the scientific case study, and after he visited this for a consultation, we then discovered that insurance denied him coverage. (We got reimbursed by this center many months later and since then they have learned how to apply for insurance coverage and presumably get approval.)

Luckily we had sent the MRI to multiple Proton Therapy Centers. The Medical Doctors at two other Proton Therapy Centers spoke to us directly after reviewing his MRI's and they both said that Proton Therapy would be a good  treatment for him. These doctors had excellent Ivy League Credentials and were co-authors of the scientific studies.

Our decision was easy at that point because only one of those two Proton Therapy Centers was able to gain Aetna Insurance coverage. We had gathered information about the costs of Proton Therapy and we had decided not proceed unless we had insurance coverage. Finally it was a "go".

We went to http://www.vrbo.com/ and to many other sites to research where we would live while he got treatment. At http://www.vrbo.com/ we found a somewhat affordable apartment.

 Treatment began in July 2013 and ended August 23, 2013. He will get an MRI in August 2014 and at that time we will discover if there is any change in the acoustic neuroma , which is obviously also known as a vestibular schwannoma.

The good news is that my husband is feeling quite well. My husband had only one common cold and a few headaches from August 23, 2013 to May 19, 2014. August 23rd was the last day of his treatments at Massachusetts General Hospital. So far, my husband has been healthy. He has not had any balance issues.  It is excellent that he continues to ride his bicycle a few times a week. (Once a week he has more time and he rides his bike for 40-55 miles at a pace of 20-23 mph. ) He ran a 5 K  race one morning in early May. He has had NO issues with facial control. He has had no eye issues. He has been able to maintain excellent  focus and concentration at work.

One symptom: He has experienced bouts of hives from time to time, and we seem to believe that the chronic hives were probably caused by the  extremely high dosage of Prednisone he took for a month as prescribed by the Ear Nose and Throat Specialist Medical Doctor. (It was originally thought that the hearing loss could be caused by a virus and that Prednisone was needed)  The allergy specialist cannot ascertain the root cause of the hives but has advised that he should treat the onset of hives with half of an Allegra pill. He gets a pill cutter and cuts up the Allegra and only takes it when he feels the onset of hives. He had chronic hives about four months without hives, but recently they showed up again.

Another ongoing symptom: He still has tinnitus in the right ear from time to time. He wears ear plugs at the movies or anywhere when the sounds are loud. His remaining ability to hear is quite sensitive and he needs to soften the environmental sounds at times.

It was excellent that he could continue working. He did need to use his vacation times to meet with doctors, however he  has not missed work due to his acoustic neuroma. He continued working during the 6.5 weeks of  proton therapy. It was very fortunate that his employer allowed him to continue working. He received proton therapy treatments for about an hour each Mon-Friday and then went back to work right afterwards. He never felt ill after the proton therapy treatments.  We found an apartment that was within 2-5 minutes walking distance to the Proton Therapy Center. He set up a virtual office in the apartment.  He used the Cancer Library resources at times.

We are hoping for an excellent outcome for him from the Proton Therapy. We are very encouraged so far. We truly hope the next  MRI will reveal that there is no growth of the tumor, that the tumor is dead, or that the growth is minimal or temporary. I am going to the trouble of posting all these details because I hope that the Proton Therapy might be a viable option for more individuals with an acoustic neuroma. We hope to be helpful to other AN patients. We will update this post as our journey continues.