Proton Beam facilities??

corynski · Posted: Sun Jun 22, 2008 11:43 am Post subject: Proton Beam facilities??

Greetings

After reviewing all my options I have decided to look further into the Proton Beam radiation treatments. Does anyone have any experience, positive or negative, with either the MPRI in Bloomington, Indiana, or the Univ of Florida's Proton Therapy Institue in Jacksonville, Fl.?

Thanks

charley/70/east tn

corynski · Posted: Sat Jul 05, 2008 6:03 pm Post subject: Re: Proton Beam facilities??

Greetings

What, no interest in Proton Beam Radiation Therapy? It is worthwhile to research this treatment as it affords a man with a contained prostate cancer a chance to beat it with minimum side effects. In searching the web I have yet to find anyone who speaks against PB treatments, and it has the least side effects of all.

In short, my PSA jumped to 10.6 and the radiation oncologist I went to suggested IMRT that he could do locally. I mentioned Proton Beam Therapy and he said it was equally as good as the IMRT, and could even have less side effects. Since quality of life is important to me, I chose the Proton Beam, and he suggested I go to the Univ of Florida Proton Institute for treatments.

Please see the YANA treatment experiences site if you are in the research stage, it has so much to offer:

http://www.yananow.net/Experiences.html

Best of luck to all. If any are interested I can post some weekly results. Otherwise, I am posting on some other boards to spread the word of this new treatment option.

charley/70/east tenn

Beth56 · Regular Joined: 30 Mar 2008 Posts: 28 Location: California

Hi,

My husband elected Proton Beam Therapy at the Loma Linda California facility in November 2006. If I can answer any questions regarding treatment, please let me know.

So far, we have been very pleased. Very Happy

Replicant · Moderator Joined: 01 Nov 2006 Posts: 206

Proton beam therapy has been around for for nearly two decades. The majority of men to date have had it done at Loma Linda UMC, which treated the first prostate patient in 1991. To date, Loma Linda has treated over 12,000 men for prostate cancer. Until 2003, LLUMC was the ONLY place in the U.S. where it was done.

I almost did it myself, for salvage, but opted for IMRT close to home for personal and financial reasons. It would have been hard to relocate to Loma Linda for 2 months.

The original question was specifically about two of the newer treatment facilities--if anyone had had treatment at either of those locations. That's probably why there were no responses at first.

Proton Beam Therapy offers at least the potential of fewer side effects (with efficacy at least comparable to IMRT)but in my situation (salvage) I would need an area bigger than just the hole left by my prostate radiated. The radiation would need to at least touch the surfaces of bladder and rectum. So in my view, protons didn't offer a huge advantage over IMRT--at least in a salvage setting. They might have more of an edge in primary treatment, where you want to hit a very precise 3D target.

There's no guarantee of zero side effects with protons. At the same time I had salvage IMRT, an acquaintance had salvage proton beam therapy done at Loma Linda. We were close in age, Gleason, and PSA kinetics.

I had some bowel irritation from the IMRT. At first, my friend seemed to have no side effects, but within a matter of weeks following proton treatment, his incontinence increased considerably--so much so that he has needed medical intervention.

We both have responded well to our respective treatments, with PSAs less than 0.1 ever since.

The above is anecdotal, and I mean it only as an illustration that side effects can and do happen with proton treatment.

The really new stuff in radiation isn't protons, but the new way of delivering photons: image guided radiotherapy (IGRT):

http://www.sciencedaily.com/releases/2007/12/071208143543.htm
http://news.theage.com.au/national/new-treatment-for-prostate-cancer-20080626-2xd1.html

and the very newest is a new IGRT machine from Varian Medical called RapidArc:

http://www.investors.com/editorial/IBDArticles.asp?artsec=34&issue=20080630
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 <0.1, 12/07 <0.1, 4/08 <0.1
http://pcabefore50.blogspot.com

Beth56 · Regular Joined: 30 Mar 2008 Posts: 28 Location: California

never m0nd

Replicant · Moderator Joined: 01 Nov 2006 Posts: 206

I hope you didn't misunderstand my post--I was trying to explain to the original questioner why no one answered him at first. In a followup post, he was dismayed about this.

I think your posting about your husband's treatment was spot on--very nice of you to offer information about his experience at Loma Linda.

I apologize for any miscommunication!
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 <0.1, 12/07 <0.1, 4/08 <0.1
http://pcabefore50.blogspot.com

Beth56 · Regular Joined: 30 Mar 2008 Posts: 28 Location: California

Replicant,

No misunderstanding. Sorry if I gave that impression. I was posting a thought and it wasn't what I wished to say. I was in a hurry leaving the house, so I deleted it. Nothing more.

When I get my thoughts together, I will post back. Smile

corynski · Posted: Thu Jul 24, 2008 10:28 pm Post subject: Re: Proton Beam facilities??

Hello Replicant and Beth and All

Well, I've been unofficially accepted at UFProtonInstitute following my first evaluation, pending the results of a CT scan. Interestingly, my PSA is down to 8.8 from 10.6 last reading, and Dr. Marcus suggests after his DRE that I'm really a stage T2a rather than T2b, and most likely contained. I'll go back in 5 weeks for another workup.

The UFPI is a busy place, as I believe all the 5 treatment centers are. They do an insurance check first, and then a bunch of blood work. Medicare covers 80% and AARP covers 20% in my case. I did read that VA and Kaiser will not pay.

I feel very fortunate about going, and I was appraised of the possible side effects, all of which I believe carry a statistical lower possibility than other treatments. He did say there could be rectal burn and/or ED and/or incontinence.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 206

I'm sure you'll find the treatments are unbelievably easy. And hopefully, 100% effective!
Best wishes.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 <0.1, 12/07 <0.1, 4/08 <0.1
http://pcabefore50.blogspot.com

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