Forbes article on Proton therapy

[Mark]

Don't know if anyone saw this in Forbes magazine or if it's already been posted here, but for those interested in Proton therapy it's a pretty informative story

http://www.forbes.com/forbes/2009/0316/062_150mil_zapper.html

There are currently 4 in development in addition to the 2 existing today with an average install cost of $150M. My take on the article is what many here have said in the past. Very expensive with no proven evidence of improved efficacy over contemporary radiation machines. Writer's premise is it may be another case of the romance of a new technology over results with a little profit motive mixed in 

For your reading pleasure,

Mark

[sgerrard]

Hi Mark,

Seems like it has been a while since I saw you here last. Hope you are well.

The article had one surprise for me. I had no idea the proton machines were so huge. No wonder they are so expensive to build. The theory of energy release just as the proton slows down and arrives at the tumor sounds so nice, but how do they know exactly how far in it will go? That seems to be the catch in trying to only hit the tumor.

Don't be a stranger. 

Steve

[ppearl214]

Hi Mark!   Thanks for sharing this.... pretty much what was already known about Proton treatment!

I am following along with a couple of patients on this site that had Proton at MGH within the past couple of years.... so, I'm trying to get a first-hand take on their progress and the efficacy of the Proton treatment on their AN's...... so far, so good on their side... waiting to hear if the AN has been stunted in growth.

Thanks for sharing!   Hi to your spouse!
Phyl

[Mark]

Hi Phyl and Steve,

Love your hats  , I need to get one of those.

I actually lurk and follow threads a couple of times a week, but haven't found a lot of posts that I could contribute anything to because there are so many well informed folks on the board. Great to see so much good information and support compared to 7-8 years ago 

Otherwise I spend my time trying to catch my stock portfolio as it crashes to the ground and calculating how many more years I have to work like most of us. I guess you can change the names in power in government but not the levels of ineptness managing things, who knew 

Back to the cave

Mark

[ppearl214]

come back out of the cave more often than not, ok, m'dear Mark?   you have too much to share (any and all stock tips appreciated as I watch my 401k tank......        )

Will be curious to get further updates on the Proton gang here. I know of some from years past *dusts off brain cobwebs* but for the most recent Proton gang, would love their take on this as well....

tsl... where is she?

Phyl

[tsl]

Making the decision of which treatment type to choose for my AN was one of the most difficult decisions I have had to make.  Once I decided to go the radiation route, I explored GK, CK, and Proton Beam.  I searched medical databases in the library, visited the Cyberknife site A LOT and took advantage of posting questions to the Drs. who volunteer their time there (God bless them all), posted with many people from the ANA and Cyberknife sites (God bless them too), consulted with different Drs. 

In the end I decided to go with Proton Beam stereotactic radiosurgery.  Since I live in Mass., I went to Mass. General Hospital.  It's been a little over a year since my treatment.  After one year my  MRI showed an increase in the tumor size.  The medical consensus is that the increase in size is due to radiation treatment and not tumor growth.  I will be having another MRI in Nov. which I hope will prove the Drs. right.

As I said the decision was difficult especially when there were conflicting opinions of people whose opinions I valued or just sounded so damn convincing.  In the end I decided to go with the Proton Beam form of radiation.  Would I recommend this treatment form to others?  I’d say that each person has to make the decision for him/herself.  What I would recommend is that when looking into radiation treatment types, don’t automatically exclude Proton Beam.  Have your questions and listen to what is said.  I met with a radiation oncologist who was advocating the use of a new machine in my regional hospital called BrainLab3 (or something like that).  Even though I had no intention of being one of the “first to be treatedâ€?, I met with him and was glad that I did.  He was another source of information for me.

Did I make the right decision for myself?  The only way I'll truly know is with the passage of time.  As for now I'm doing fine.  I've just about lost most of my hearing on my AN side.  This was expected.  I was told that my tinnitus would get louder.  I've had it so long I'm just not sure if it's volume had increased.  My lifestyle hasn't really changed.  I workout regularly and try to continually challenge my balance. Forget walking heel-to-toe!  Occasional minor headaches that Advil easily takes care of.  ( If I get overtired, I'm more apt to get headaches.)

I didn’t mean to have such a lengthy post.  I am so indebted to this site and to the many people who have shared both their positive and negative experiences that if I can help someone I’m glad to do it.


-Theresa (tsl) 

[chocolatetruffle]

hello mark
i was considered proton at loma linda (got declined due to my tumor size). after reading the article, it confirmed everything i know about it - it is good alternative and with the plan to build more facilities, hopefully the cost will go down and more people will have access/understand this therapy.  thanks for sharing!

[sgerrard]

Love your hats  , I need to get one of those.

Any color preference?

As with SBI for surgery, I hope we keep getting updates on how proton beam works for AN patients that have had it.

Steve

[suboo73]

As with SBI for surgery, I hope we keep getting updates on how proton beam works for AN patients that have had it.

Mark,  Thank you for the link to the Proton Beam article. 
This was one of the first things i asked my sister about, as i was learning about all treatment options.
Although i have not ruled out any form of treatment, i have not yet convinced myself there is enough evidence to use Proton Beam for an AN.  Perhaps i did not find the information available on studies for AN treatment, although it was my impression that there are not many (or any) at this point.  Since i want to know the statistical information/outcomes, i stopped researching about PB.

The Forbes article is very interesting, though.  I had already seen the pictures of the machine on-line, pretty amazing!
Two machines within 6 miles of each other?  I don't think that is necessarily useful, but that's just me.

So thank you for sharing this link.
In the meantime, i agree with Steve - for those here now and those yet to come (   ) we need the updates.

Hope you are doing well!
Sue

[stoneaxe]

I'm 5 years out from Proton Beam Therapy at MGH. Still not sure it was the right decision. I'm currently in waiting mode for an MRI to let me know if the growth that was seen in March of last year was a fluke. I was 6mm x 5mm at the time of therapy and stayed that way until last March when the 6 went to 11mm.

I did months of heavy research...consulted multiple Drs concerning surgery, radio-surgery and the different types. In some sense I feel like the best "sales" job was done for the proton beam. The physics sounded good as explained....I liked the idea of narrowly targeted delivery. But there seems to be some recent controversy about toxic effects that aren't as prevalent with other delivery systems and the data was available back then too, just not readily available to the layman. It certainly would feel better to know I was getting straight information based on sound scientific/medical data and not just what was going to bring in the $.

I'll never really know for sure if I made the correct decision or not. Things could be worse if I had gone another way.

[elliemae]

I'm another MGH proton grad, and I'm pretty much dittoing Theresa and Stoneaxe here, except I'm a very recent grad. Just finished in mid-December - I had a 30 treatment fractionated therapy version, not the one-shot radiosurgery, due to doctors' concern about the likely facial nerve involvement. I too did tons of research, read all the good and bad stuff about all the therapies, decided on radiation, consulted with the CK & proton radiation therapy doctors, and decided on proton therapy as the best for me.   I could still have W&W, as my wonderful neurotologist recommended, but I was becoming obsessed with the thing in my head. 

Choosing treatment is difficult when so many options are open.  So, I have to say, even armed with all the information, I think my decision came down to that "gut" feeling.  I felt it was right time and right therapy.

As with the other radiation therapies, I guess only time will tell if it worked!  At 3-months out from end of treatment, I am feeling pretty good, do have that ear fullness (maybe swelling? Maybe allergy?!), and still have facial spasms which I had for some time before treatment.

I too hope that all of the proton grads will continue to report on their progress, as there aren't too many of us and the followup info benefits not only us but everyone else who's looking at treatment options.

Elaine

[ppearl214]

those I was hoping would chime in here and I thank you for sharing what you have shared... there are other MGH Proton AN'ers here that I haven't seen post in a while that I hope will also log on and provide insight.  Some of the best research is by patient experiences and I thank everyone here that had proton for sharing... some of you already know I'm following your personal progresses and appreciate the updates.... see you at the brunch xoxo


Phyl