Proton Beam Radiation

[Tisha]

I don't see this mentioned here often.  Is it because it's one of the newer treatments and there are not many facilities yet?  It seems the beam doesn't pass thru the tumor, which is better.  I read they do fractionated now, but does that mean the 3-5 treatments like with photons?

I live close to a center that actually has this, and I think I might send my stuff there for another evaluation.  I was just wondering about this.  Any opinions or comments are appreciated.

Tisha

[ppearl214]

Hi Tisha,

Pls try doing a "search" option here for 'proton therapy'.... you should find discussions on it. I know of Proton here in Boston at Mass Gen Hospital (I know tsl and elliemae are both treated at MGH... tsl, last year... elliemae just started it last week) as well as Loma Linda in CA.... I thought there was also a site in TX offering Proton.  Data is kinda scare on the efficacy of Proton therapy on AN's.... I hear its very costly as well. 

Hope that helps.
Phyl

[Tisha]

Why didn't I think of that?  Sorry.  I went and searched and didn't find much.  I agree that I think  there is not much statistics out there, which isn't encouraging.   

Tisha

[ppearl214]

Hi Tisha,

Hmmmmmm......       I did a search option on "proton therapy" and it gave me 2 pages of findings... some posts dating back to 2006. Please try again.  suggestion is also to email tsl and elliemae to get their take on the treatment process. I saw both of them this past weekend at our ANA discussion forum brunch here  (see AN Community forum for the brunch thread) and tsl looked great for having her Proton done approx 1 yr ago. elliemae looked good too and I believe she is now on week 2 of treatment. I'm sure both would be glad to help.

Phyl

[sgerrard]

Hi Tisha,

First, a hint on searching. Go back to the main page before you search, or you will only be searching on one section of the forum (i.e. only AN Issues, if you search from here). I tried it on the main page with just Proton, and got 4 pages of results.

There was a study done in 2005, see this post: http://anausa.org/forum/index.php?topic=1021

There are only a few facilities that do it, as Phyl said: MGH Boston, Loma Linda CA, MD Anderson in TX, that I know of.

Here is another discussion on it: http://anausa.org/forum/index.php?topic=5996.0

Proton beam has some advantages for some kind of tumors, especially things like liver cancer. That doesn't mean it is a perfect match for ANs, and you have to be focused on what benefits it offers for your AN treatment, not tumors in general.

Steve

[chocolatetruffle]

hello tisha
when i was in the early stages of decision making, i explored proton with loma linda and actually talked to the nurse there.  Here is their website, which you can request for a complimentary consultation online. The nurse will call you and answer any questions you might have. 

http://www.protons.com/

As I understand, there is a size limit for proton beam (same as CK etc), due to potential swelling of the tumor after treatments. They told me they do not accept patients with tumors bigger than 2 cm (if my memory serves me right), not sure about your tumor size but hope this information about free consultation helps.

The proton beam machine is extremely expensive, so it is not as common as other radiation treatments.  I think there are only 3 centers offering proton beam in the US. 

good luck!!!

[Tisha]

Thanks everyone.  I didn't go back to the main page when I typed in Proton Therapy, but did it here on the forum.  That must have been the problem.  I also agree that I need to find the best solution and statistics for AN tumors, mine in particular, when I start comparing statistics.  That's when it gets so confusing.

There is a treatment center just a little over an hour from where I live.  Not that that is the deciding factor, but it will be nice if that is the way I would decide to go.

Tisha

[elliemae]

Hi, Tisha
I have also PM'd you with all the below plus some extra info.

As Phyl noted, I just started proton therapy at MGH in Boston last week.  My treatment plan is for 30 treatments over approx 6 weeks.  Theresa (tsl) had the radiosurgery one-shot treatment.  As far as I can see, if the radio-oncologist thinks you're a good candidate for this treatment, whether to do one-shot radiosurgery or the fractionated therapy then depends on what the Dr thinks is best for your situation.

In my case, I researched all types of radiation options, but primarily focused on CK, for which I  had 99% decided on until I met with my neurotologist who referred me to the MGH radio-oncologist.  I have facial spasms (aka hemifacial spasms) that made both doctors think my neuroma could possibly be facial and not vestibular (or not, who knows!!!  According to them, only surgery could tell.  I decided that wasn't for me).  Anyway, the MGH dr convinced me that the fractionated proton beam was a better fit for me than the cyberknife, primarily due to the no-pass-thru aspect and the fractionation having less impact on the non-tumor areas.  MGH's website also has a lot of information, as does the Loma Linda site.  I looked at everything, read all the articles (pro and con), and decided that the "no exit dose proton beam therapy" was what I would do.  (That's what it's called in a brochure I just picked up today).

I think getting that complimentary consult with Loma Linda that chocolatetruffle mentioned is a great idea.  I missed that one!

Good luck!
Elaine

[Mark]

There have been numerous posts in the past on the pros and cons of Proton therapy on this board as well as comments from doctors on the subject. Other than the promotional, but questionably relevant "no exit dose" issue, there is not a compelling story in favor of it for AN's. To the contrary, what studies have been done tend to demonstate a higher incidence of complications following this treatment particularly in the areas of swelling and hearing and facial nerve impact compared to CK / GK . While intuitively appealing, the "no exit dose" issue is only valuable if there is some proven damage from the standard radiation protocol or enhanced result from Proton. I have never seen any study that could make that case.

Mark

[Mark]

In support of my previous post re: Proton results for AN, attached response from Dr. Medbery

PRotons have not been shown to be superior for any tumor. They are probably as good for certain things such as clivus chordomas etc, but they have not been shown to be superior or even as good as CK or GK for AN. In fact, MGH reported ontheir series in 2003:

RESULTS: The actuarial 2- and 5-year tumor control rates were 95.3% (95% confidence interval [CI], 90.9-99.9%) and 93.6% (95% CI, 88.3-99.3%). Salvage radiosurgery was performed in one patient 32.5 months after treatment, and a craniotomy was required 19.1 months after treatment in another patient with hemorrhage in the vicinity of a stable tumor. Three patients (3.4%) underwent shunting for hydrocephalus, and a subsequent partial resection was performed in one of these patients. The actuarial 5-year cumulative radiological reduction rate was 94.7% (95% CI, 81.2-98.3%). Of the 21 patients (24%) with functional hearing (GR Grade 1 or 2), 7 (33.3%) retained serviceable hearing ability (GR Grade 2). Actuarial 5-year normal facial and trigeminal nerve function preservation rates were 91.1% (95% CI, 85-97.6%) and 89.4% (95% CI, 82-96.7%).

If I were getting that kind of toxicity with CK I'd slit my wrists.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

[Mark]

Another discussion of Proton therapy from Dr. Spunberg

Proton beam has the ability to deposit energy at a defined distance from the surface through the "Bragg Peak" phenomenon that cuts down dramatically on the entrance and exit doses. It does not, however, utilize a robotic tracking mechanism like Cyberknife reducing its capability in particular for a moving target such as the lung or liver or even the prostate. Therefore the treatment with proton beam is administered over many weeks, like IMRT or conventional RT, as opposed to only a few treatments called stereotactic radiosurgery. Therefore there are pros and cons to each, but CK is far less expensive than proton beam by the order of around 10 to 25 fold.

--------------------------------------------------------------------------------
Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

[Mark]

and one more perspective from dr. Medbery


The biologic effect is the same. There are differences. Proton beam treatment does not give any exit dose to speak of, but the targeting does not seem to be quite as good at present. Determination of the dose distribution requires precise determination of the range of the protons in tissue, and at present the inaccuracy can be up to 3 mm. In some situations, that may be overcome by the uniformity of dose within the target and in other situations it may be a considerable deficit. There is intense interest in proton theapy, but developmentsare stil in their relative infancy.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

[Tisha]

Thank you all for the information.  I did search yesterday and find that the hearing preservation was only about 30%, which is the deal-breaker for me.  Tisha

[elliemae]

Just to let you know ....
I read all the info that Mark has quoted before I made my decison. And some additional info. Yes, there didn't seem to be as much support for the treatment.  And of course this quote was a bit disturbing:  "If I were getting that kind of toxicity with CK I'd slit my wrists." 

However, given all my other ailments, including the potential facial nerve involvement, I thought the extended fractionated therapy would be better for me along with the no-exit dosage.  And my comfort zone increased when I met & talked with the radiation oncologist.

So, I guess I will be a test case, eh?!  We shall see ....

[ppearl214]

Just to let you know ....
I read all the info that Mark has quoted before I made my decison. And some additional info. Yes, there didn't seem to be as much support for the treatment.  And of course this quote was a bit disturbing:  "If I were getting that kind of toxicity with CK I'd slit my wrists." 

However, given all my other ailments, including the potential facial nerve involvement, I thought the extended fractionated therapy would be better for me along with the no-exit dosage.  And my comfort zone increased when I met & talked with the radiation oncologist.

So, I guess I will be a test case, eh?!  We shall see ....

*hands elaine dark chocolate candy bar!*

I know you are on wk #2 of proton and I'm sending the healing vibes!

*hands Mark apple dumplin from last Sunday's ANA forum brunch*  Yum! Even better with ice cream on it!

tisha... and now, we see the debates that we endure in this decision making process. What may be right for one may not be right for another.  I know that you will take all info and do what is best for you.

Back to work for me now. I have a spreadsheet with auto-calculations I have to corrupt.

Phyl