I'm due to start radiotherapy in early December - 6 weekly doses at 36 gy to irradiate the prostate via tomotherapy.
I was diagnosed in early July 24 when I was put on Degarelix (Firmagon) and month later, Enzalutamide (Xtandi). I'm hsMSPC (Gleason 7) and my PSA has dropped from 530 to 0.03 between then and now.
Any advice on how to best avoid side effects in long and short term? My RO advised that this is pretty accurate form of therapy and a spacer is not necessary.
I believe many side effects are caused by inflammation so am wondering if an anti-inflammatory diet helps... and wondering what else, if anything, might help.
(I'm in the UK on the NHS, so don't have huge amounts of choice re very latest treatments.)
Thanks folks!
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Broccoli24
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Were you given advice on bowel and bladder prep? That is the main thing to make sure organs at risk are out of the way and don't move. Also be nice to the operators 😉 (just kidding). Probably the same machine I had for part of my treatment (Accuray).
The other thing you might consider is Melatonin supplementation. There is some evidence it can protect healthy cells.
Hospitals vary. At mine they were very particular (this seems to be one of the the more extreme).
I first had a meeting with a dietician and had to follow a special diet with nothing that would be gas producing and it is a lot: most vegetables, whole grains etc., all the good stuff. We called it the "low fart" diet. In retrospect I wouldn't be that extreme again (just eliminate some trigger foods and fizzy drinks and try to not swallow air). You can find lists of foods to avoid on line.
They took it seriously, at the simulation. I hadn't started the diet yet and although I had done the bowel prep I still had gas. I couldn't get rid of it myself so they used a catheter (to be avoided if possible 😉).
At my hospital I had to use an enema (microlax) 2 hrs before and then empty bladder 1hr before, then drink 300 ml of water.
The enema was unpleasant but did mean the bowel was empty. The water instructions did not work for me, what I did was over-fill and then empty part of it 5 min before the appointment.
Tips:
- If you can, check for any delays when you get there (no fun waiting with a full bladder)
- The total time from dressed to dressed again is about 20 mins on this machine (the Viewray MR Linac I also had was nearly 60 mins in the machine) .
- They will ask for your full name and DOB each time but there should also be your photo on the machine. Make sure it is you!
39 EBRT here. Gleason 4+5. 6 years on nearly as good as prior. Exercise, eat what they tell you to whilst undergoing RT. We had very few side effects. We used Sorbolene and Dove soap for showers, post each treatment, where necessary. Great outcomes to you🌺
I had 37 sessions of RT back in March/April this year. I had oats for breakfast. Then for lunch, 2 slices of wholemeal bread + salmon or scrambled egg with small amounts of salad (lettuce, toms, pepper). Dinner typically spag bol or fish fingers with some broccoli. This provided some fibre and wasn't very farty. I managed to have a poo every day before the session.
My main difficulty was the (un) comfortably full bladder requirement. That was OK initially but became more difficult towards the end. I wrote down the exact timings in a diary and I had about a 10 min window between not being full enough and overfull!
I had a spacer which I think was well worth it. But that is not done on the NHS.
I had few SE's other than a need to pee more. I was given tamsulosin to ease that. I'm on ADT so I get some SEs from that - achy muscles, some brain fog and low libido. But no hot flushes. I'm on a Med type diet, I think fish is important. I also exercise quite hard with classes 5 times a week. I live near Portsmouth. Message me if you need further details.
My main difficulty was the (un) comfortably full bladder requirement. That was OK initially but became more difficult towards the end.
Same thing with me. I had 3 initial 7Gy boost treatments with an MR Linac in one week and they were a bit challenging, especially with the time in the machine (nearly one hour). I also had a bit or acute GU toxicity (grade 2/3) immediately after that treatment but went away with the lower dose. The (moderate) GU side effects came back later in the lower dose treatments (and have yet to fully subside).
I was prescribed Tamsulosin as well and initially turned it down but took it later (which I sort of regret). It can cause complications with iris surgery (e.g. cataracts) if you have ever taken it but I did not know about it at the time.
If you have eye surgery it is important to let them know you took Tamsulosin. See Intraoperative floppy iris syndrome.
RANZCO stated that this side effect is referred to as Intraoperative Floppy Iris Syndrome (IFIS) and is best approached by prescribers, patients and the operating ophthalmologist being aware of alpha-1-adrenergic receptor antagonist usage in the patient. This is important as permanent structural changes to the iris have been observed in patients who have taken treatment for even a short time, and also in patients years after ceasing medication.
Just follow advice from your doctors, I had my prostate radiated about 10 years ago despite being stage 4, of all my treatments it was one of the easier ones. Biggest hassle is going every day for 6 weeks. My Rad Onc did have me take large doses of a cranberry supplement while undergoing treatment. Check with your docs regarding this, again follow your doctors instructions.
I think the issue is there has not be a good RCT (and RT techniques evolve as well) and this drives variability in approaches.
"This survey highlights the need for further research to define best practices for patient behavioral modifications and continued guidance on evidence-based approaches for PTV margin selection, with the aim to improve overall patient outcomes and quality of life"
Broccoli24, I just finished my RT in mid September. I had 70 gray in 28 fractions to the prostate and local LNs. Appears to be less than your dosage. I was given IG/IM RT. (Photons.) My RO said I was a good candidate for a spacer (Barrigel in my case) so I took her advice wanting to minimize SEs. By the second treatment, I could barely pee. I was quite alarmed. By that afternoon, my RO had a prescription for Tamsulosin ready for pickup. So before the third hit, I was taking two tams plus 2 ibuprofen every evening. Thankfully, it worked. But the experience made me dread the RT experience, no knowing what else in my gut might be harmed. My RO said the level of my inflammation is unusual. Take that to heart, but be prepared. Maybe have the Flomax handy ahead of time. Okay, fast forward to today, 3 mos since completion, I’m down to one tamsulosin every other day with no ibuprofen. I’m also back to 90 % of where I prior to RT. So like they say, it takes 2 to 3 months for recovery. I think I could almost cease the tam. I’ve been on Orgovyx for 9 mos and a half dose of Abiraterone for one month. Was also Gleason 7, unfavorable, but my PSA never exceeded 16.5. Am presently <0.02. Good luck in your battle, friend.
I read your bio and wanted to suggest that you consult with your radiation oncologist (RO) before taking any supplements during or after your radiotherapy. Your RO can guide you on which supplements are beneficial for you, which won't adversely interact with your prescribed medications, and which won't aid in the repair of prostate cancer cells. Best of luck with your radiotherapy!
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