Has anyone done the proton therapy?

[PARKER3237]

Just curious if anyone had their MO suggest doing the proton therapy? When I have my discussion with my new MO, I want to ask if proton therapy would be a fit for myself. I have to deal with the prostate cancer and the met pelvic lymph nodes as well as the met bone issue.

[God_Loves_Me]

yea very smooth

[EBBEFLUT]

Yes, I have. Gleason 9, no mets, 30 sets of 2,4 GY, together 72 GY, almost dayly, between Feb and March 2024 in Essen, Germany. Parallel with ADT (Trenantone..similar to LUPRON ?) quarterly since Feb 2023. PSA now 0,014. Minor inkontinence (pads) and minor bowel problems. To sum it up: So far I am very happy with the outcome.

[Brook5318]

Hi Parker,

My cousin used Proton therapy for his cancer. I haven’t heard any complaints from him. There are two locations here in Oklahoma City. One at OU medical’s Stephenson Cancer Center and the other is operated by Integris.

[PARKER3237 in reply to Brook5318]

Thank you. I was just curious as there are several locations here in Texas and one here in Dallas up the road from where I am. I was just wanting to ask my MO when I get an appointment for treatments.

[Hidden]

Parker…I’m in San Diego and we have Ca Protons…I’ve done a total of 78 treatments…when PC was first discovered (maybe 9 years ago) I did 28 treatments…All was good for a couple of years then the beast returned on the other lobe.,.I did 20 more…Got rid of it but as usual they found a “spot” outside the prostate which they zapped….Couple of years later it had spread and I was metastatic…I’ve done 30 more treatments , various times on the “Hot Spots” on my bones.,.As Dr Rossi the head Oncologist at Ca Protons says….”we’re putting out the fires”….ive been metastatic for almost 5 years..,I’ve talked with guys who have been totally “cured” and had it not been for the “spot” I might have been cured also…Dunno..,,If you go that route it’s painless and absolutely no side effects..,At least I didn’t have any.,,,,I’m all aboard the Pluvicto train early July..,.Good luck

[PARKER3237 in reply to Hidden]

According to my PET/CT they say it shows the left prostate lobe was contained in the biopsy but in the scan, it showed met for lymph node pelvic and met for bone. Do you know anyone who has had met in the areas I am talking about that have done proton therapy and zapped the areas?

[Hidden in reply to PARKER3237]

Parker…those areas you talk about is where they zapped me…As far as other guys, I only talked to them in the proton lobby waiting for treatment and we didn’t get into specifics…Dr Carl Rossi is the head man and he’s very personable …you should give him a call and discuss your situation …He’ll give you straight answers…California Protons in San Diego….Sorry I couldn’t be of more help…

[PARKER3237 in reply to Hidden]

That's fine. I will ask the MO when I get an appointment as this is all new to me since the diagnosis. I put in a request at the Proton site here in Dallas to chat with someone there.

[FlowerPowerBB]

Hello, Parker - - I had an RP in 2008, Gleason 4+5 WITH "CLEAR" MARGINS, which brought PSA to undetectable until 2013. There were no METS detected from scans.

By 2013, my PSA had risen to 1.5, and I found a clinical trial for SAMARIUM153 infusion. That treatment did not reduce the PSA and was immediately followed with radiation to the pelvic bed (25 times). That reduced PSA to undetectable. There was some scaring to my colon detected about 18 months later and corrected with cauterization.

By 2021, my PSA was again back at 1.7. The scan revealed a few small mets in the soft tissue of the lower left abdomen. In 2022, Proton Beam treatment (25 times) focused on those areas and seems to have corrected that: PSA is still undetectable 6/10/24.

I tolerated both radiation treatments with no immediate side effects.

The key is to closely monitor indications of renewed PCA activity and take early action.

[PARKER3237 in reply to FlowerPowerBB]

How does one know when to watch the PSA numbers since mine always stayed in the range of less than 4.1. Usually was 1.2-1.4 but no alarms went off until it had gone to a 5.6 back in December 2023.

[MBOY1]

I had 35 sessions proton beam therapy 1/19 but was a G3 +4 no Mets. All went well and I recommend if you’re a candidate.

[FreddythePig]

I had proton therapy at Sibley Hospital in Washington, DC, in 2020. 5 days a week for 8 weeks. Prep required completely empty bowls, but once my digestive tract taught me how to accomplish this, it was not a big problem. I recommend getting as early an appointment as possible so that the rest of your day is free to live the good life. I had no pain, the procedure only took half an hour (really only 15 minutes on the table), and I was home again in time for breakfast.

A year after treatment, I developed radiation-induced proctitis. Lots of bleeding and weight loss. Two treatments of cauterization fixed the problem. The process was uncomfortable, but I elected not to have an anesthetic. As a result, I walked out of the place, ready to enjoy the rest of the day. I was able to watch the procedure on the computer screen while discussing what restaurant to go to for lunch while the doctor did his thing.

One very important caution and this probably applies to most treatments. The androgen deprivation chemicals they describe suck calcium out of your bones. I should have done more to counteract that, and one might say I should have been warned by the medical profession. I am now on once-a-month Evenity injections in an attempt to strengthen my bones. This is a 12-month course, so I won't know if it is working until the next bone density test in October, as that's when my insurance company, out of the goodness of their hearts, will cover the procedure.

I describe my posture, due to severe osteoporosis, as resembling a cashew. I walk with a cane, but I still walk and am too busy with volunteer work to dwell on aches and pains or other health issues. At age 80, I've got nothing to complain about.

[j-o-h-n in reply to FreddythePig]

Hey Fred, at 87 years old I've got plenty to complain about..... all stems from my ex-wife. BTW give her my shitty regards next time you're in the pen. Thanks!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[Hidden]

No issues with IMRT or SBRT. Big issues with Proton. Grill the RO relentlessly on their experience/results with each site they are radiating. Don't settle for "I've done thousands of these" or non-numeric comments about results. Get specifics and keep drilling.

[AlanLawrenson]

I had Proton Beam Therapy in Seoul, South Korea at their National Cancer Centre in Q1 2013. Great outcome and 11 years later still in remission. I live in Sydney, Australia. Our first PBT center due to open in 2025. How pathetic!

I would go down this path again.

Read all about it in my best-selling book available from Amazon. "An ABC of Prostate Cancer Today - 3rd Ed". I guarantee you will get good info from it.

Regards

Alan