Anybody have proton beam at MGH, Boston?

[janz]

I have spent days reading all the numerous entries. You are such a supportive and knowledgeable group of wonderful people. After much research I have decided  to go the radiaiton/radiosurgery route.
I was wondering if anyone has had proton beam treatments and what their thoughts,experiences,
or side affects were. I believe that they use proton beam for cases that where the lesion is close to critical structures. I have a 2 cm AN left side, abutting my brain stem.  Would appreciate any commments.Thanks

[ppearl214]

Hi janz and welcome.

I found this thread for you in this section of the forums. Mark shares with us some info that may be useful to you about the Proton at MGH. I forget who it is on this site that has had proton treatment there and I know there are some others that have researched it but not sure of final decisions.

http://anausa.org/forum/index.php?PHPSESSID=11bf87a38d84503ea44707c4b35848ae&topic=348.0

Hope this links helps... and again, welcome.
Phyllis

[russ]

Hello
  I believe it is Dr Medberry who reports a slight increase in facial nerve risk.
  Proton beam is expensive so you might check with your insurance.
  Russ

[janz]

Thanks so much for your help and information and replying to my first post!!!!!
I checked out the link you attached and read the info-when a person is in this gathering of
information stage, it seems like you want to research all options. Sounds like proton beam is expensive and not as widely used for ANs.
Have a good day. Keep up the good work.
Janz

[ppearl214]

hey janz

glad to help. If you are looking at other radio-surgery options in the Boston area, please know:

Beth Israel is doing Cyberknife (right now, the only one available in New England (http://bidmc.harvard.edu/display.asp?leaf_id=13361), although I have it on good sources that Brigham/Woman's is doing a purchase of CK as well)

Brigham/Womans is doing FSR with Novalis (met with them as well) (http://www.brighamandwomens.org/bwhcancer/pat/adult/radiation-oncology/our-services.aspx)

Tufts Med is doing GammaKnife (http://www.bostongammaknifecenter.org/)

MGH has proton, as you know.


Hope these links help. Hang in there!
Phyllis

[ken]

hi I had proton radiation at loma linda u in ca back in feb so far so good. No side effects at all either during or after treatment. I go back to have folllow up in nov. I was told by my doc at loma linda that she had treated over 100 patients and had never had one regrow. Hope I'm not the first. It's the most accurate and least dammaging to the surrounding tissue at least that was my unserstanding, Thats why I chose it. good luck ken

[wsullivan]

Hello
  I believe it is Dr Medberry who reports a slight increase in facial nerve risk.
  Proton beam is expensive so you might check with your insurance.
  Russ

[Windsong]

oh dear Russ, what has money to do with having good treatment suitable to a specific situation? if one has paid for and carries insurance i would hope as a patient if I was in that postion i sure would not be thinking about how expensive or not expensive the treatment was that i am told i ought to have? and that the imsurance would stamp it and pay for it as i'd have enough on my mind than dollars they might have to pay??? (of course if i had no insurance and had to pay up front myself i would look at dollars ha!)

thanks for your post,
Windsong

Hello
  I believe it is Dr Medberry who reports a slight increase in facial nerve risk.
  Proton beam is expensive so you might check with your insurance.
  Russ

[wsullivan]

I had proton beam radiosurgery nearly five years ago at MGH.  I had a 1.8 cm AN on the right side.  I had a balance problem beforehand and some hearing loss.  The balance problem has not improved very much.  The hearing in the right ear is now totally gone.  I have considerable numbness on the right side of my face, teeth, jaws, half of my tongue, eye socket, lips and so forth.  These are areas served by the trigeminal nerve.  My facial nerve seems to be okay.  The doctors think it is unlikely that the facial numbness was caused by the radiosurgery but I cannot find any other likely cause.  I am speculating that the inactivated tumor may be bumping into the trigeminal nerve but haven't found out yet.  Specialists have done an ENG, and an MRI looking for other possible causes but everything is normal.  I'm interested in finding more people who have been through the proton radiosurgery as well to see how they are doing.