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Author Topic: Proton beam at MGH?  (Read 3610 times)

epc1970

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Proton beam at MGH?
« on: August 03, 2009, 10:53:08 am »
I had most of my tumor surgically removed but a small amount was left in to spare my facial nerve. I've had a cosultation with Dr Loeffler at MGH who reccomended fractionated proton beam if my tumor shows signs of growth-currently is it shrinking! Have any of you had proton beam treatment instead if CK or GK? What was you expirence like? What was the outcome? Dr Loeffler was very impressive but I want to make sure I have decided on the best treatment plan in case I should need it.
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ppearl214

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Re: Proton beam at MGH?
« Reply #1 on: August 03, 2009, 12:04:21 pm »
Hi

will list a few folks here that had proton at MGH, with good outcomes and not.

elliemae and tsl are both users here that had proton at MGH within the past 1-2 yrs.  They are still being monitored to see how things are going... but, for them both, it seems so far so good.

stoneaxe (bob) had proton at MGH and unfortunately, it didn't work.. and just had a surgical removal of his AN within the past couple of months.

As we know, 'individual results may vary....'.... so, you can "PM" (email) them here... as well as check the "Radiation/Radiosurgery" forum here as they have all participated in discussions here about Proton at MGH (please use the search option on top of the screen, to the left, and try "MGH Proton" for your search criteria. You will find much).

Good luck with your continued research! :)

Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

tsl

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Re: Proton beam at MGH?
« Reply #2 on: August 04, 2009, 08:25:50 am »
Quote from: epc1970 on August 03, 2009, 10:53:08 am
I had most of my tumor surgically removed but a small amount was left in to spare my facial nerve. I've had a cosultation with Dr Loeffler at MGH who reccomended fractionated proton beam if my tumor shows signs of growth-currently is it shrinking! Have any of you had proton beam treatment instead if CK or GK? What was you expirence like? What was the outcome? Dr Loeffler was very impressive but I want to make sure I have decided on the best treatment plan in case I should need it.

Hi,
I'm Theresa (tsl) and I've sent you a pm.  Feel free to get in touch with me any time.
Take care.
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AN diagnosed Dec 2006
Approx. size 9 x 6  x 4 mm
Proton Beam radiosurgery wtih Dr. Jay Loeffler (radiation oncologist) and Dr. Paul Chapman (neurosurgeon) at Mass. General on Nov.2, 2007

sgerrard

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Re: Proton beam at MGH?
« Reply #3 on: August 04, 2009, 09:03:42 am »
I hope the remaining tumor continues to shrink, and you never even need radiation! I don't know about MGH Proton, but I am curious whether you are now in Portland, where you had surgery, or in Boston, where MGH is, or are you just a nomad?

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

epc1970

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Re: Proton beam at MGH?
« Reply #4 on: August 04, 2009, 01:08:42 pm »
Hi Steve
Ok. Here is the short version: I live in Portland, Maine-my brother lives in Portland, OR and is the head of the cardaic cath lab at OHSU hospital. He put my in touch with Dr Johnny Delashaw and his team there. After consulting with Dr Delashaw and a team at MGH, I had my surgery out in Oregon with Dr Delashaw-post op care is great when you know someone on the inside! It was worth the effort to go to Dr Delashaw becuase I have virtually no post op issues. Since I live on the East Coast, I thought it best to have some follow up care nearby so I went to Dr McKenna at MGH who sent me to Dr Loeffler for an opinion on what to do with the small amount of tumor that remains. I too hope that this sucker continues to shrink  :)
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elliemae

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Re: Proton beam at MGH?
« Reply #5 on: August 10, 2009, 02:26:15 pm »
Hi, sorry to be so late in replying.  Haven't had a chance to browse here for a bit!  I've had the proton therapy at MGH, as Phyl noted.  I've sent you a PM too. 

Hope all goes well with whatever choice you make!  And do come to the brunch in October. It's great!

Elaine
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