We are VERY PLEASED to report an outstanding outcome with Proton Therapy for the treatment of my husband’s vestibular schwannoma, also known as an acoustic neuroma. My husband just had his first annual MRI on Aug 20, almost exactly one year after his 6 week Proton Therapy treatments ended at Massachusetts General Hospital at the MGH Francis H. Burr Proton Therapy Center. (
http://www.massgeneral.org/radiationoncology/BurrProtonCenter.aspx) We met with Dr. Jay Loeffler at MGH and the good doc said that on the MRI it now appears that the acoustic neuroma (vestibular schwannoma) has NOT changed in size. The MRI shows there is a darkened area on the inside of the tumor, indicating that the blood supply to the tumor is significantly reduced. He will get another MRI again next year and we will update you then.
Proton Therapy seems to not only have produced good medical results, but also the proton beam treatment seems to have resulted in no disruptive side effects- for an entire year. During the 6 weeks of proton treatment my husband continued to work from a virtual office with no issues at all. He reported to work one day after treatment/traveling back home. After the treatment he missed NO TIME from work due to any health issues at all for 12 months. He was able to focus intensely and to meet all deadlines. He worked without interruption at his job, which was intellectually demanding.
Usually as the vestibular schwannoma grows, it presses against the balance and facial nerves however, my husband had no issues related to any of those problems. We were warned that any form of radiation can cause an inflation of the tumor within the first six to nine months, which typically results in unwanted symptoms. If my husband had balance issues it was not evident in his daily activities. He continued his love of bicycling, almost every day after work. When it was raining he went to the gym and used the fitness equipment. On Saturdays he usually zipped by on the bike maintaining of around 20-23 mph -with his group of bicycle friends- in the intensely hot weather here. Thankfully my husband’s facial control and eye movements were always completely normal- he had no facial seizures and he had no facial involuntary movement problems.
We are grateful that Proton Beam Treatment proved to be a viable alternative to neurosurgery, so he could avoid a painful recovery period that is typical after any neurosurgery. Thankfully my husband only had a couple of headaches in 12 months and he simply treated them with Advil. He has accepted the fact that the tumor is still present but that there is a strong likelihood that it will probably not get larger. He was at peace during this last year.
Other info:
1. He completely lost his hearing before the Proton Therapy in his left ear and he did not get it back after the Proton Therapy.
2. Although acoustic neuromas are thought to be slow growing benign tumors, we believe that the growth of his acoustic neuroma may have been more rapid than is usual. His hearing loss happened during a short span of time. He went from minor hearing loss (first noted by an otolaryngologist September 2009) to complete deafness (deafness diagnosis: November 2012.) For this reason we intensely researched medical solutions for him, since we wanted to prevent more potential damage. We met or talked on the phone with at least a dozen doctors, all of whom had encouraged us to "watch and wait." We repeatedly rejected the "watch and wait" approach. We focused on clinical studies. (A great source of info:
http://www.ncbi.nlm.nih.gov/pubmed/) We scheduled dozens of telephone conversations with the kind and caring ANA Proton Therapy patients at this Acoustic Neuroma forum. (THANK YOU) After some time passed, Proton Therapy emerged as the best match for us. We considered how it is gentle enough to be used on thousands of children who have cancer and on people with tumors in eye tissue, which is a very delicate area. (You may want to watch this recent video:
http://www.youtube.com/watch?v=8Of8FmaDqT8 ) We visited and talked to the doctors at several Proton Therapy Centers and decided on Proton Beam Treatment in California only to hit a wall of repeated insurance denials. We continued our quest and in late May of 2013, a wonderful staff member who handles Insurance issues at the Francis H. Burr Proton Therapy Center told us the happy news that our insurance for Proton Beam was approved, which we believe indicated that the MGH staff has superior experience in treating vestibular schwannomas.
3. From December 2012 to July 2013 -before he started the Proton therapy - he had hives, sometimes 4 times a week. The hives started only after he took the massive doses of Prednisone- a month-long regimen of very heavy Prednisone prescribed by the local otolaryngologist. We understand that the otolaryngologist was following the usual medical protocol in that Prednisone should be prescribed immediately to treat a possible viral issue in an attempt to possibly restore the lost hearing. For my husband the heavy dosages of Prednisone appeared to have caused hives. We were glad when the hives went away, almost completely, during the 6 weeks of Proton Therapy-and we were glad when he didn't need to take Allegra at all for the next several months for hives. However, fairly recently- maybe in June of 2014- 10 months after the Proton Therapy- the hives re-appeared about three or four times each month. When he gets hives, he simply takes a half tablet of Allegra to ease the itchiness, as prescribed by the local allergy specialist.
4. He sometimes has tinnitus in the other ear. He had it before the Proton Therapy and he still has it at times.
From our perspective Proton Beam Therapy produced an excellent outcome. Although my husband's vestibular schwannoma is not gone, we are pleased that it has not grown- and that he has had no new symptoms. Proton Beam treatment is worth considering at Massachusetts General Hospital, where a team of experts is led by Dr. Jay Loeffler, who has co-authored multiple clinical studies on Proton Treatment for vestibular schwannomas. Our sincere thanks go to this doctor and to the entire team at Massachusetts General Hospital Francis H. Burr Proton Therapy Center.
If you are considering Proton Therapy, lean on us. We can share photos of my husband getting treatment. If you are considering MGH, also contact us. We can share knowledge about lodging options in the Boston area. We can help you with setting up a virtual office (tapping into MGH resources such as high speed internet access at the MGH Resource Center for Cancer patients.) Just send us a private message. We'd be glad to help.
Message to all of you--> Stay optimistic and keep smiling. (...she says with a few tears of relief and with abundant gratitude). We offer many thanks to those of you who spoke with us about your treatment outcomes. All of you are in our hearts. We are at your service. Thanks for joining us in celebrating this good outcome!
