Glow Club Photon and Proton Beam Class at Mayo AZ

@johnsquires, fellow AZ members @rotate and @donl offered good information.

The Glow Club is a casual opportunity for Mayo Clinic Phoenix patients to meet with one of Mayo's Phoenix's Medical Physicists and discuss the technical aspects of treatment. You can bring a friend or family member if you wish.

Glow Club is split between PROton and PHOton treatment modalities.
- PROton 1st and 3rd Fridays at 12pm – 1pm Phoenix time.
- PHOton 2nd and 4th Thursdays at 12pm - 1pm Phoenix time.

Topics Covered:
• The radiation treatment process
• The energy of radiation and how it works
• The treatment machines
• Open question and answer session

Please see Radiation Oncology front desk to sign up for the next session or call 480-342-1262

Thanks so much

I’m planning on Proton therapy in the spring. I’m in Tucson so am going to the Mayo Clinic in Phoenix. Any info or experiences with it, would be appreciated.

Nice meeting you today. Have a great time in your trip. Jim

Hi Jim, it was a pleasure. How did your treatment go?

@johnsquires
You are lucky to be close to Phoenix Mayo. I had my proton radiation done at UFHPTI which is in Jacksonville Florida as Mayo Jacksonville did not offer proton just photon radiation treatments.

Both Phoenix and Rochester offered proton radiation. Jacksonville will offer in 2026 after they build a new cancer center.

UFHPTI has been doing proton radiation since 2006 and a leading world wide proton radiation facility. Proton unlike photon will stop at a programmed location and not exit the body like photon does. In theory that will help reduce radiation damage to surrounding organs and tissues.

You did not mention your Gleason Score. Did you have a Decipher Test? I think going to any Mayo for treatment you are in good hands. Without knowing what treatment you are getting high dose lessor treatments or low dose more treatments and the pros and cons of those can't really give you much information from my experience with proton radiation.

I did have markers put in and the Space/Oar. Are you having that done at Mayo Phoenix. Radiation treatmens affect everyone different. Need to asked your R/Os questions. Also go on the internet and look up radiation treatments. You can also go on Mayo web site and research information as well as Cleveland Clinic and others like John Hopkins. You can learn alot about radiation treatments which will allow you to asked specific question to your R/Os that is specific to you.

I don't think from your post they have put in your markers or space/oar or gone over that with you. Nor the preps to do prior or after. Diet, etc. is important to prevent gas. Also supplments are important as UFHPTI limits them but then asked me to take cranberry to help with UTIs prevention.

Let us know more of what you are getting and I am sure those on MCCs can help supply you with tons of information.

Thanks for the reply. I had a Gleason 4+4. I’m taking the shorter course, as the outcomes seem similar. I believe they use Barrigel as their spacer. I haven’t had the markers put in as I’m leaving this month on a 3-month trip I was determined to go on. I’m on Orgovyx to suppress the disease until I return.

Thanks for the Cleveland Clinic and John Hopkins pointers. Believe me I’ve been researching for some months now.

Good suggestion on the cranberry. But as far as flatulence, something I’ve never been overly prone to, I’m now very prone to. My diet is generally very good..

MCC’s?

@robertov
MCC is abbreviation for Mayo Community Connect. Months ago Colleen did an abreviation list to help with all the abbreviations. As I think about it I don't think we put MCC on the list.

The cranberry came from my R/O at UFHPTI. It was shown in research to help prevent UTIs. UFHPTI is big on research. They got a 25 million dollar federal grant to do long term study on proton and photon radiation treatments. When they gave me my information packet it included the two books everyone talks about and dozen pages of research done on radiation treatments.

My R/Os and PCP (primary care doctor) both told me that the shorter course and longer course have equal success rates. Both my PCP and R/Os said studies (new ones being done) are now showing that the shorter course with higher raditaion was causing some increases in side affects. You would expent that if the radiation was higher.

I am not sure if making decision today that I would not chose the 5 course one versus 30. Much quicker and over. I had the longer low dose. 30 rounds of proton radiation. Had some minor side affects but was easy to deal with. The exception was months after my treatments ended I tried sex again only to have dry orgasm. I was shocked and went on MCC to find out that it was a common side affect.

I then checked with my R/O who said same, common as radiation damages the seminal vessels. I was disapointed I was not told about this. But one poster said did not remember being briefed either but said was getting so much information probably missed it. I then remember same thing sitting there for an hour twice going over all the side affects, what to expect, this is common, this is not, and then let us know about them when they come up. Some can be treated with medications others with techniques and some will lesson over time.

3 month trip. Hope you have a good one.

The PROSTox test from MiraDx
corp. helps determine if one has a LOW or HIGH risk of delayed urinary tract symptoms. ( months to years ). It is about 5% for LOW likelihood and near 15% for HIGH. Acute side effects are about the same. They subside. The 5 sessions can be modified to weekly versus every other day whether LOW or HIGH on the PROSTox test.