Glow Club Proton Beam Class

@johnsquires
Not familiar with GlowClub.

You are scheduled for proton beam therapy in June. Can I aske where your treatments will be?

Did you have additional test done like Decipher and PSMA?

Since you have decided on proton radiation (I had 30 rounds of pencil beam proton radiation at UFHPTI) I would like to recommend a FREE information packet that UFHPTI will send you free and fed ex. UFHPTI has been doing proton radiation since 2006 and has done so much researched on radiation treatments.

The information packed includes the two books you will see mentioned on MCC (one is Walsh). Tons of research information on prostate cancer, latest treatments, and their program. Regardless of whether a person choses photon or proton radiation and where they go I always recommend asking UFHPTI for the information packet as just contains so much helpful information.

There is no presssure to get treatmens at UFHPTI at all. They are all State employees and salaried. However their treatment center has 5 gantries of the lastes technology in proton radiation and the doctors there and tech have done tens of thousands of proton radiation treatments.

"Brotherhood of the Balloon" I concluded 2.5 months of weekday mornings of proton radiation at Loma Linda Hospital in Loma Linda, California late May of 2010. The procedure included a full body cast for exactness in directing the proton beam from the overhead proton "beam machine:. but, just prior to the alignment, the nurse proceeded to place a balloon in one's rectum, expanding the balloon to better position for exactness. I believe the procedure has changed since that time.

There was a "reunion" of sorts with over 125 men who had undergone proton radiation therapy at Loma Linda calling the reunion "THE BROTHERHOOD OF THE BALLOON". At the last meeting with the staff, I was given the paper "fit for framing" of my acceptance and entry into this unique club.

Loma Linda was the pioneer in proton radiation, initially for children with brain cancer. Targeted radiation with beamed exactness minimized trauma to the other aspects of the child's brain.

Lastly, I came to meet a number of patients in the morning prior to the procedure. The majority of the patients were doctors from Southern California and beyond. That fact reinforced my singular decision to undergo proton radiation therapy. Gleason 3+3; PSA: 6.47. Slow growth prostate cancer. Each morning the cost was $3300. per "beam day", not including the other expenses prior to the actual beam therapy. Expense for housing and such was to each. I stayed at March AFB during almost three months. So, economics can play a significant metric in the decision on what therapy to use. RH/Florida

@westernflyer
Were you living in Florida when you had your proton radiation?

UFHPTI was also a pioneer back around 2006 just like Loma Linda was for proton radiation. UFHPTI is where I had my 30 rounds of proton radiation.

You mentioned the ballon. Did they have the Space/Oar back then. That procedure placed a gel that hardens and moves the rectum away from prostate like the ballon does. What year was your proton treatments.

I had mine in 2023 and had the Space/Oar done along with gold markers. I tried to describe on MCC about the simulation bed and how it is contoured to fit your body and place you in the precise spot.

Medicare now pays for proton radiation treatments.

I was living in Spain shortly after completing my 24 years in the active US Army. My decision was a solo decision meaning no assistance from any doctors or other. Just with several months of research and alittle luck made the decision final. 10 weeks or 50 morning visits. I believe knowing much more about proton radiation therapy, two options it seems. More radiation over a shorter amount of time..or less radiation over a long period in time. The later seems to validate the less damage to any tissue.
I can recall one morning. A child was awaiting proton radiation therapy as I passed by the child's waiting room. No parents were there..the child was about two or three years of age. I don't know the gender. The child's entire skull was affixed lines about 1/8 of an inch apart. I assumed then the child "diagram" on the head was intended to better target the cancer. Actually, Loma Linda...was called Loma Linda Children's Hospital and one entered through that gateway. I stayed at March AFB quarters and played racquetball almost every day at lunch with several Air Force officers learning how to "fly" an unmanned aircraft. Having done a number of deployments to include Afghanistan and Iraq, I would tease them on how they could go home each night after a day of "combat". As an infantry officer, they seemed to play harder when I mentioned the aforementioned "dig" at their profession. Keep in mind, the expense for those not able to drive or other to these proton facilities. TriCare for Life paid for everything..I paid for housing, meals and car rental. Glad to hear Medicare pays for this care, in hopes it remains so...

I’ve never heard of “GlowClub.” I had 28 sessions of proton beam radiation for a Gleason 7 during April-May 2021. I chose to have SpaceOAR Vue injected (an improvement over the standard SpaceOAR Hydrogel) rather than having the old-school endorectal balloon inserted at every session. My urologist offered the balloon method, but I politely refused. (The injection - whether it’s SpaceOAR, Barrigel, or BioProtect - is preferable over the endorectal balloon method.
Would be interested in hearing more about this “GlowClub” group if you find it.

Hey guys, to the uninitiated among us, why a balloon in the rectum? Sounds counter intuitive by having the rectum expand; my RO (photon IMRT) wanted the rectum as small and collapsed as possible. Thanks,
Phil

Rectal tissue does not tolerate radiation well so, moving the rectum away from the field of radiation reduces toxicity.
Prior to FDA approval of rectal spacers (in the U.S. in 2015), the old-school method was to inflate a ballon in the rectum prior to each radiation session, which moved most of the rectum away from the radiation. Unfortunately, the anterior of the rectum still received a full dose of radiation. That was a problem…..
With FDA approval and introduction of the rectal spacers - SpaceOAR Hydrogel in 2015, SpaceOAR Vue in 2019, Barrigel in 2022, and BioProtect in 2023 - radiation-induced rectal injury has been greatly reduced.
Sometimes there may be anatomical or other reasons why rectal spacer injections can’t be done, in which case endorectal balloons can be the fallback option.
But, some ROs still use the old-school method.

This info about Glow Club was from a patient who in 2024 proton beam therapy for prostate cancer at Mayo Clinic Phoenix, AZ.

Back in 2022 my wife had Proton Beam radiation at Mayo PHX. Because of Covid they offered the class on line presented by a Physicist. If the Glow Club option is not available for you you can see all kinds of videos on YouTube that explain how it works.
A truly amazing feat in Physics.

I went to the Phoenix Glow Club - Proton Beam seminar/tour recently. You sign up for it at the check-in desk. Proton Beam meetings are 1st and 3rd Fridays 12pm-1pm at the main radiation oncology waiting room. You can bring a friend, too, if you sign up for a +1. You probably need to be a patient, or maybe a prospective patient. I don't really know.

It consists of about half an hour meeting with a proton beam physicist (ours was Martin Bues, PhD - head physicist). He talks about the physics a bit, draws on the white boardand takes questions, answering anything within his expertise. We had questions ranging from "what's a proton" to "how big is the Bragg Peak" - i.e. from minimal knowledge on up. He also talks about the mechanism by which the proton beam kills cancer cells, and how it minimizes damage to other tissues.

After that, a tour of a treatment room with explanations, then a tour "behind the scenes" of the treatment room - that is really bind boggling. You see a giant, very complex machine that is attached to the nozzle (the thing you see in the treatment room that shoots the beam at you). The whole room sized thing rotates 190 degrees - with the nozzle, which is all you see in the room. I'm a techie and I was in awe of this thing. And Dr. Bues what there answering questions.

You can find out what's really going on with proton beam therapy.

But it's not really a club - it's a recurrinng event.

Well worth going to, whether you are a techie or just have questions about what is being done to you.