Has anyone had Proton Therapy for treatment option?

[rebecca1]

We are considering Proton therapy to treat my husbands AN, size is 1.7x1.2.  Has anyone else had this type of treatment?

Thanks,

Rebecca

[ppearl214]

Hi rebecca,

I'm not sure which Proton location you may be researching (ie: Loma Linda, MGH, etc). but I know on this site... tsl (Teresa) just had Proton for her AN at MGH mid-last year... I also thought users here of BostAN and/or BostonJake also had Proton here at MGH. You can try a "search" here for Proton Radiation to learn more.

Curious... were you quoted outcomes re: AN and Proton treatment? I had a miserable time, during my treatment decision process, in finding data to support efficacy of Proton therapy for AN's (even locally from MGH). I know many here have inquired and if you have any info to share.... I'll take it.

Also curious if you have researched Gk/CK/Trilogy/FSR and why you boiled decision (at this point) to Proton.  Many here that are researching will appreciate your thoughts on it....

Hang in there!
Phyl

[rebecca1]

Hi Phyl,

We are considering Proton because it was "highly recommended" by our oncologist  as the "ultimate radiation".  As far as why use Proton over Gamma or CK, I have no information on its direct treatment of AN.  The claim has been made (on net and by several doctors I have spoken with, again doctors in Cancer field) that Proton is stronger radiation, causes virtually no collateral damage, and is non-invasive.  I was warned to be careful, that Proton is so strong that if done incorrectly will cause major damage (although I see this as a problem with any of the radiation treatments).

Our thinking is this:   If it is stronger radiation, would this not raise the likelihood of "better" destroying the tumor so hopefully it won't come back?   It is such cutting edge technology and they use it to treat a lot of brain tumors.  I know this does not make it better, and I really believe that who is operating the machine is equally as important as what machine you use. 

We are going to MD Anderson in Houston because we had treatment at MD Anderson for my husbands cancer.  MD Anderson was the ULTIMATE hospital for Cancer treatment and we HIGHLY trust their team of doctors. When we were told we needed treatment for the AN, MD Anderson was my first thought. I know that in the Cancer field, they are on the cutting edge of so many new treatments.  If you have Cancer, there is no place else you would rather be.  Plus we know a lot of the doctors. If we go with Proton, this is why we would use Anderson.   At this point, I only know that they use Proton to treat AN, but have no information on how many done, outcomes, etc.  I will definitely post any information that we gain after visiting MD Anderson. 

We have met with a surgeon, a Cyberknife doctor, a local radiologist who was highly recommended to perform Gamma.  Anderson's Proton  is next week.  I don't know what Trilogy and FSR are? 


Thanks Phyl for all your time and info.
Rebecca

[ppearl214]

Hi Rebecca... makes for a terrific decision-making process...    I'm glad to hear you are crossing "T's" and dotting "I's".  Personally, I haven't heard of it being the "ultimate" radiation as I didn't think there were such a thing... to me, I think it depends on the individual situation and diagnosis as to which form of radiation would work... oh, well.....

I found a terrific link, here on this site... tsl (Teresa, who I previously noted) did a post on the Cyberknife Patient Support board, where drs volunteer there time to answer questions as unbiasedly (is that a word?) as possible.

My dear buddy Mark did a post here to share the dr's response re: Proton and note a study that was done at MGH....

http://anausa.org/forum/index.php?topic=3468.0

In Mark's post, click on the link and it will bring you to the exact post on the CK Patient support board (http://www.cyberknifesupport.org/forum/) with Dr. Medbery's response (lengthy but worth reading).

For Trilogy, "Craig" (a user here) had it done and he's doing well from what I hear. Try doing a "search" for Trilogy and you can see Craig's story.  For FSR (Fractionated Sterotactic Radiation), oh, there are many many here that have had it done to treat their AN's. Also try a search for FSR for further info.


So, to Mark and tsl/Teresa (see you at the brunch, hun!), I say thank you for starting this leg work... I hope this info is helpful.

Phyl

[rebecca1]

Thanks for the link.  This is the kind of information we really need to help make the decision.  I want to take it to Anderson see what they have to say about it.  I certainly don't want any of those side effects. The only symptom my husband has is ringing in ear.  I cannot imagine coming out of treatment with no hearing, facial paralysis, etc.  I read some posts who seem to do OK with it, and some who did not.  Probably like everything else.  I really like the studies referenced by Dr. Medbery though, facts and statistics can be a good thing.  All the articles we have read, it really seems like the chief advantage to Proton is less collateral damage.  Stronger radiation, more targeted hit, and less damage than conventional radiation. Put Proton in search engine and you get this over and over.  Are GK and CK considered conventional radiation?  Am I reading it right?   Yet Medbery's statistics seem to show more problems with Proton than GK or CK. 

Making the decision - the toughest part??   Thank god for sites like this one that help sort through the info.

[Mark]

rebecca,

Since Phyl is tossing my name around, let me offer my two cents on what I have seen written on Protons.

There is no such thing as the "ultimate radiation" , I would classify that as marketing hype. All radiation works the same on the tumor whether it's source is cobalt ( GK) , linear accelerator ( CK and others) or proton. Collateral damage is a function of the delivery accuracy of the machine, not the type of radiation. In that regard, CK , to my knowledge is still the best based on clinical studies (.89mm) with GK slightly higher at 1.2-1.5 mm. The alleged advantage of Protons is that they hit the tumor and stop whereas X-rays pass through. However, the amount of dosage in the X-rays is designed to be so low in individual beams which do not cross as to minimize impact on healthy tissue. Proton machines are hugely expensive , usually 4-5 times a CK unit ( $20-25M vs $5-7M) but have to date not shown any enhanced efficacy in terms of outcomes compared to the other machines, yet as the Post from Dr. Medbery showed in clinical studies it does seem to have a higher level of complication. I will offer another post from Dr. Medbery on his view of Proton and I find the closing comment to be quite illuminating so I'll highlight it.

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

[rebecca1]

Mark - Great info.  Thanks. 

But I don't get it.  Anderson's proton center cost $126 million dollars.  Why spend that kind of money if there is no greater benefit (not to mention more complications) than other types of radiation?  The treatment of the tomorrow?  I really don't want to be the guinea pig.

[sgerrard]

First: Hi Mark, nice to see you back. 

Next: Hi, Rebecca, I don't know a great deal about Proton, though I have heard of it. But I think it is important to separate Proton in general, for a wide variety of tumors, and Proton specifically for AN. My impression is that it has not been used extensively for AN, and that the results when it has been used were not as good as expected. That doesn't mean it is not a very useful system for treating many kinds of tumors; only that it may not be the best choice for ANs. The location of the AN next to cranial nerves, the type of tumor, and the fact that they are slow growing and benign, puts ANs in a different category from other tumors. ANs don't need strong radiation, just very precise delivery.

My view: GK is all in one day - a little too much at once. Proton, Trilogy, and FSR, many small doses over several weeks - too many repetitions, more chances for stray radiation, not quite enough at once. CK is just right - 3 to 5 precise zaps.

It sounds like you are doing lots of homework, and gathering lots of information, keep up the good work.

Steve

[Mark]

Rebecca,

Hard question to answer, the $126 million sounds like the total cost of a separate center, bricks and mortar, etc , plus the machine. At any rate, having been in the medical supply business for 25 years I can safely say that not all hospital decisions are made from a logical cost/benefit business perspective. Poor due diligence, doctor ego , especially one who is a big revenue generator, or wanting to maintain a industry leader/ cutting edge image all tend to factor into these things. MD Anderson is clearly one of the great cancer treatment centers in the world and financially well endowed I suspect so I wouldn't be surprised if some of the mentioned non financial motivators come into play. Also as Steve and Dr. Medbery both noted, perhaps Protons might demonstrate some enhanced efficacy on some specific cancers or tumors, but the studies to date clearly show a higher complications and less tumor control rates than "conventional" radiation delivery machines for AN's. Other factor is that an AN is treated in proximity to cranial nerves and perhaps Protons don't react as well there as in other parts of the body. or perhaps they haven't refined the dose or delivery protocols yet. Who knows at this point and with so few centers ( Loma Linda and MGH come to mind) investing in protons there is a certain "guinea pig" element involved.

mark

[Mark]

Hi Steve,

Thanks for the welcome back. Phyl finally agreed to raise my fee/post rate 

Seriously, I've had a lot of work and travel related time constraints the past few months as well as an another issue that affected my ability to participate, but I promised Phyl I would try to drop in occassionally to offer my thoughts as time permits.
 

Mark

[ppearl214]

cheeky!

good to see you posting again, Mark... and as for the fee raise..... um, I have a dr's note for short term memory... I don't remember THAT conversation!

xo
P

Hi Steve,

Thanks for the welcome back. Phyl finally agreed to raise my fee/post rate 

Seriously, I've had a lot of work and travel related time constraints the past few months as well as an another issue that affected my ability to participate, but I promised Phyl I would try to drop in occassionally to offer my thoughts as time permits.
 

Mark

[rebecca1]

Yes, how naive of me..... I forgot all about that little thing called ego, my proton machine cost more than your CK machine, etc.  It was mentioned to me that Proton may have a possible side effect of unknown element as it is unclear what happens when the nuetrons produced by the Protons circulate the body.  Theoretically, this could cause problems down the road, but it is unclear in field if this is the case.  I have not reasearched this myself, just passing along info, take it for what it is.

On another note, we just met with a rad/onc who does FSR (linear accelerator).  28 treatments, 2 min each,  no screws, sounds pretty good.  What are major differences between CK and FSR?  From researching this site, I get the impression Linear is less accurate than GK or CK. Correct?  Is there an advantage to using the fractionated treatment over 28 days vs something like CK in 3 days?  Is the theory that each 28 day treatment produces less radiation therefore less likely to damage adjacent nerves and preserve hearing?

It just seems like each doctor visit just raises more questions......

Advice is GREATLY appreciated.

[Mark]

Rebecca,

People on this board have had good results with all the machines, so take the following comments in the context of probabilities based on clinical studies I've seen and conversations or reading posts from various neurosurgeons / radiation oncologists over the years.

In general FSR (25-30 session) machines are not as accurate as CK or GK , hence the radiotherapy classification as opposed to radiosurgery. This tends to be the driver as to why doses are between 1-2 GY so as to minimize collateral damage to healthy tissue. Down side is total radiation dose usually is in the 50 GY range as opposed to 12GY for 1 dose GK/CK or 18GY for 3 fractions CK. other issue is the ability to replicate positioning obviously has more risk at 30 sessions than 3

Tumor control and hearing preservation rates with FSR, overall are at best equal and generally slightly worse than GK / CK results.

GK requires the frame and is limited to one dose, CK has the has the ability to do fractions which may give slightly better hearing preservation % and matches the GK level of accuracy without requiring the frame, the latter being a personal comfort issue for some people.

again, folks have good outcomes with all the machines, but those would be some points of difference that I see.

Mark

[Mark]

rebecca,

one other point of clarification. all machines other than GK use a linear accelerator to generate the radiation, GK uses Cobalt. There is no difference biologically on the tumor from either source.

Mark

[rebecca1]

Mark -

So CK is a linear accelerator, same radiation, just delivery method is different than FRS treatments? CK is more accurate so can give higher doses of radiation and only need 3 treatments? 

Forgive me if I sound ignorant, but why would 50 GY range be a downside?  And why do they do so many treatments of FSR - why not stop at say 10 or 15 treatments to make total radiation similiar to GK or 3 fractions of CK?

 If it takes 50 GY to work for FSR, why does it only need 18 GY to work with CK?

 

Thanks,
Rebecca