Ulcerative Proctitis 18 months after Proton Beam Therapy?

I did not have that experience. I had 28 fractions of proton beam radiation (2.5 grays per fraction) five years ago (19 April - 28 May 2021), along with 6 months of Eligard. We used SpaceOAR Vue. Had no rectal/bowel side-effects at all.

Did you use a rectal spacer?

How many fractions did you get?

How many grays of radiation did you receive per fraction?

For your radiation-induced proctitis (& other tissue damage), have they recommended hyperbaric oxygen therapy?

@rmp321, I added your discussion to the Prostate Cancer group as well as the Proton Beam Therapy group. Did you see the questions from @brianjarvis above?

Hi,
With any kind of radiation I would go for the spaceOAR gel. Rather be safe than sorry months or years later.

Dave 3+4

Hello, @brianjarvis, thanks for your reply. At Loma Linda a water-filled rectal balloon was used instead of SpaceOAR due to their patients’ better experiences with the balloon. I also received 28 fractions over a 5 1/2 week period. Not sure how many grays of radiation per treatment were received. The suppositories my local team recommended slowed the bleeding but they have not cured the ulcerative colitis, just as they had advised. I will move forward with phase 2 of their suggested treatment, which hopefully will cure this condition, and will post more as I learn what this next treatment entails…

Thanks for your advice, @clevelandguy! The team at Loma Linda University Health recommended water-filled rectal balloons inserted before each treatment instead of SpaceOAR (Proton Beam was administered Jan-Mar, 2024). As I was told SpaceOAR would dissolve in my body over time, the ‘old school’ balloon method seemed to be the better option for me. I’ll post updates as treatment for my Ulcerative Colitis progresses.

Hello, @colleenyoung, thank you for adding my name to these group discussions. Yes, I replied to the questions from @brianjarvis. Not wishing Ulcerative Colitis on anyone, but hopefully someone who has had a similar after-effect from Proton Beam Therapy for prostate cancer will reach out.

@rmp321 When I was researching this topic (back in 2020-2021 prior to my treatments), comparisons between endorectal balloons and SpaceOAR Hydrogel (and probably similar results later with Barrigel and BioProtect rectal spacers as well), found that since the balloons were inserted into the rectum (instead of between the rectum and the prostate), that it left the anterior wall of the rectum fully exposed to radiation, and as a result there were higher rates of rectal injury.

They gave me the choice of 20 fractions @ 3.0 grays/fraction (60 grays total), 28 fractions @ 2.5 grays/fraction (70 grays total), or 30 fractions @ 2.0 grays/fraction (60 grays total). I used the mid-range number of fractions but the higher number of total grays. I didn’t want to undertreat it; at the same time I wanted to minimize the per-fraction dose (sort of the Goldilocks Principle).

I didn’t experience any adverse side-effects using the SpaceOAR Vue product.

Have they suggested for you to use hyperbaric oxygen therapy (HBOT) to heal the radiation-damaged tissues causing the bleeding? I’ve read that it can be effective.

Did you have ulcerative colitis going into treatments? Dr. Rossi talks about this in his portion of this 2023 Mid-Year PCRI presentation: https://www.youtube.com/live/WTqPnSRYtW4
—> Starting at about 4:48:15.

He talks about HBOT prior to that (at about 4:46:00).