Treatment

[TJ]

I am a new member and my first post.  I am in wait and see mode as my AN is fairly small at 5mm.  I have recently heard of a different treatment that is called Proton Technology.  Has anyone heard of this?  It is done at Loma Linda Medical center in California.  According what their web page says it has much less side effects than radiation.

[sgerrard]

Proton beam therapy is similar to stereotactic radiation treatment, using protons instead of x-rays.

There have been some topics on the forum about it, and several people here have been treated with it. Here are two topics:
http://anausa.org/forum/index.php?topic=9817.0
http://anausa.org/forum/index.php?topic=1021.0

If you do a search for proton beam, you can find others. Besides Loma Linda, it is done at several other places around the country. I think proton beam gets its best results treating various cancers throughout the body, rather than treating benign brain tumors such as acoustic neuromas.

Steve

[ppearl214]

Hi TJ and welcome. Proton treatment is radiation.... also offered at Mass General Hospital in Boston and I believe somewhere in the Houston(?) area.  Very expensive treatment, not a lot of data known on its efficacy specific to AN treatments.  I know of 4 folks here that have had Proton treatment... one failure, 2 being monitored and one many years out.  Recent AN patients of Proton (in past 2 yrs or less) are users here by the profile names of "tsl" and "elliemae". Both were treated at MGH in Boston. I know them both personally and spend time with them face to face. Both seem to be doing well and tolerating the treatment well.  Been monitoring their situations (as well as making sure they are well fed at brunches held here in the NE) as I look to seek their progresses. Both are terrific about sharing their Proton Radiotreatments here on the forums. Steve has provided terrific links for reference as well.

Also look for user Stoneaxe. His Proton treatment did not do as hoped and he recently went for surgical removal here in Boston as well. He's been doing great, based on his updates (look for his "paddleboarding" experiences, especially in the "AN Community" forum).

A well-rounded reference for your research.

Again, welcome to the forums.  We're all here to help as best as we can. Please hang in there and sending wellness wishes your way!

Phyl

[cindyj]

I just talked with a man yesterday who is heading to Jacksonville, FL for Proton treatment for his son (I assume it's at Mayo down there).  Cancer, not AN, but I just wanted you to know there's another place for it as well.  Don't know where you are in the country.

Best of luck to you,

Cindy

[leapyrtwins]

Hi TJ and welcome to the forum 

You say you are a new member, but I'm not sure if you're a new member to the ANA or to the Forum.

If you aren't a new ANA member, please contact them and they'll send you their informational brochures as well as a WTT (willing to talk) list.  You don't have to be a member to get this information - but you will find it very valuable.

If you are a new member to the ANA, I'm sure they've already sent you this information. 

Jan

[TJ]

Thank you all for your comments.  Like everyone else going throught this we all want to make sure the treatment we get is the correct one.  Yes I am a member of AN and sent they the same question but they have not responded so I thought I would put it on the forum.  I go for my next MRI on 9/1 and since my AN is small if it has not grown I am sure my doctor will just want to wait and see.  I am not sure that would be good either as all I have read says the smaller the better.  Thanks Again.

[suboo73]

Hi TJ and welcome!

Sorry you have to join this club, but it sounds like you are doing your homework!
I did speak with someone at Loma Linda. 
They said i would have to send my MRI pics after 6 month interval and they would let me know if i was a good candidate for proton beam.
After more research, i decided to stay in Watch and Wait for awhile longer...since being misdiagnosed for a long time, i figured i could go awhile longer! 

Keep doing your research - i have been at it for over 8 months for myself; but know about ANs since my sister was diagnosed 6 months before me.
When i talk with her, we know that our AN journeys are very unique and no two are necessarily the same even for siblings!

Do your homework and you will eventually 'know' what is right for you.
All my best thoughts and prayers to you.

Sincerely,
Sue

[Vivian B.]

Hi TJ

I can't offer much advice on your question at this time, but just wanted to welcome you to the forum. I see a lot of others with more knowledge about this have already provided greated information.

Vivian

[Jim Scott]

Hello - and welcome, TJ.  Thanks for posting.  I can't add anything substantive at this point but I trust you'll visit us as often as you feel necessary.  We understand your situation and want to help in whatever way we can.

Jim