Author Topic: 7 year post-Proton Beam treatment status  (Read 14110 times)

kayakrguy

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7 year post-Proton Beam treatment status
« on: November 19, 2005, 07:54:20 pm »
Friends,

I had a 1cm AN treated at the old (there is a new state of the arr Proton Beam facility at MGH Boston now) MGH-Harvard cyclotron in 1998.  My most recent semi-annual MRI shows the tumor as still 1 cm in size.  My post treatment results were 1) loss of hearing in the AN ear; 2) facial nerve sensitivity and spasms when in bright light, along with some facial nerve weakness--eg, smile is mildly lopsided.  My face does not like long exposure to bright lights or cold wind.  The use of Darvocet when the face is painful is sufficient for relief...

It took me awhile to adjust to the changes post AN since I had moderate to severe hearing loss BEFORE the AN.  I did use a bi-cross hearing aid for awhile but found the sound quality poor and changed to a single hearing aid  but, of course, sacrificing sterophonic hearing with that choice.

Best wishes to all of you,

Jim Woods

Jeff

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Re: 7 year post-Proton Beam treatment status
« Reply #1 on: November 19, 2005, 11:23:00 pm »
Jim,
At what point after your treatment did you begin to have facial problems? What was your doctor's explanation for this?
Thanks for sharing,
Jeff
NF2
multiple AN surgeries
last surgery June 08

kayakrguy

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Re: 7 year post-Proton Beam treatment status
« Reply #2 on: November 20, 2005, 10:20:10 am »
Jeff,

My facial weakness and pain began developing about 6 weeks after treatment.  I had stereotactic but not fractionated proton beam...in other words, I had it in one treatment session.

The reasons for these developments which, I must make clear, were made clear to me as part of the risks associated with radiation, are as follows:

Even though radiation can be 'targeted', 'fractionated' etc, there are three factors that make collateral damage from radiation of an AN a very real possibility.  The first is that the acoustic nerve (hearing) facial nerve (movement) and  trigeminal nerve (feeling) lie in very close proximity to the vestibular nerve and it is almost impossible to avoid having them receive some of the radiation and the second reason has to do with the fact that in order to reach the tumor target radiation has to pass through adjacent or intervening healthy tissue to reach the targeted tumor.  In my case the facial and trigeminal nerves WERE affected by the radiation..  Different radiation particles, the overall amount of radiation and different methods of delivery are variables which enter into this as well, but I am not going to bore you with those matters here.  I hope this is helpful.

Jim


bugman

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Re: 7 year post-Proton Beam treatment status
« Reply #3 on: January 23, 2007, 12:03:49 pm »
where did you have yours done?

ppearl214

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Re: 7 year post-Proton Beam treatment status
« Reply #4 on: January 23, 2007, 12:45:44 pm »
Hi bugman and welcome.

As you can see by the dates, this thread dates back to 2005, but I do see in the original post, the Proton was done at Mass General Hospital in Boston

Here is a good link to the MGH Proton Department for reference:

http://www.mgh.harvard.edu/cancer/about/providers/radiation/proton/index.asp

I am only aware of a few folks that have had the proton treatment done (some as recent as BostonJake, I believe). If you look for his posts here or check the "Radiation" forum here (backtrack or check the "Archives"), you will find further info by those that have had the Proton treatment done and their status updates.

I hope this helps.... and again, welcome.

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

ppearl214

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Re: 7 year post-Proton Beam treatment status
« Reply #5 on: January 23, 2007, 12:47:16 pm »
Bruce, great AN minds think alike... thanks! :)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"