Starting EBRT on Monday… advice? - Advanced Prostate...

Advanced Prostate Cancer

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Starting EBRT on Monday… advice?

Jpburns profile image
15 Replies

Just looking for advice. Doing 28 fractions starting Monday at Emory/Winship.

Specifically:

EBRT using photons – plan is for 50.4 to whole Pelvis, ~55 to PSMA PET positive LN (lymph node), and 70 Gy to prostate+SV (seminal vesicles), all delivered simultaneously using 28 fractions, using daily CBCT.

Any treatment tips, warnings, suggestions? Worried about side-effects.

Staying at Cancer Society’s Hope Lodge for the duration (basically 5 1/2 weeks).

Thanks in advance.

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Jpburns profile image
Jpburns
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15 Replies
CaptainKrunch profile image
CaptainKrunch

Completed 41 treatments of very Similar SBRT in October. Biggest challenges were arriving with a full but not too full bladder. Seems simple but it's not. Commuting with a full bladder was unpleasant... arriving an hour before treatment to give myself prep time worked best. Full pelvic radiation wipes out your gut biom. Radiation Oncology will shut off probiotics and other antioxidents ... so I experienced stomach flu symptoms throughout. Cleared up towards the end as they shifted focus to my prostate. Best wishes!

Tall_Allen profile image
Tall_Allen

Exercise as heavily as you can. Exercise helps radiation work better/reduces hypoxia, helps healthy tissue stay healthy, and prevents fatigue.

Daily ED meds for 6-9 months may help prevent ED, and may help you pee better.

Here are side effects you might experience:

prostatecancer.news/2018/10...

Jpburns profile image
Jpburns in reply to Tall_Allen

Appreciate advice. That part about ED; man… men are apparently really concerned about their erections! This is not top of mind for me. But am concerned about urinary side-effects.

Scout4answers profile image
Scout4answers

Exercise worked well for me, almost no side effects except in last week needed a few naps

Jpburns profile image
Jpburns in reply to Scout4answers

Yay! That’s what I want.

Scout4answers profile image
Scout4answers in reply to Jpburns

See my profile, your life is hardly over and your sex life can continue unabated if you want it to. After 30 months of Lupron we are still going strong. Secret elixir/cocktail = Cialis , weed and lots of water prior to act. Glad to give you more details but then you will have to create a comic book about my exploits😎🏋️‍♀️💃🕺🥂

Izzysdad profile image
Izzysdad

I didn’t have any side effects at all until after the treatments were done. I jokingly asked my RO if he was sure they had the thing turned on. Probably exercise was the key to my experience. I did end up with HRC and a rather miserable 12 months or so getting that sorted out but you may not have that issue. Fight one battle at a time.

Jpburns profile image
Jpburns in reply to Izzysdad

HRC? Hillary Rodham Clinton?

Izzysdad profile image
Izzysdad in reply to Jpburns

Sorry no. It stands for hemorrhagic radiation cystitis. Basically blood in urine. Can be either acute, right after treatment, or years later. Don’t worry about it unless you get it.

Mgtd profile image
Mgtd

Pick up some Imodium. Had similar treatment and around third week into it I needed it for about a week. Totally resolved; no issues.

I worked out every day - weights and aerobics and I needed a short snap in the afternoon. I am pushing 80 so your mileage may vary.

I used their special diet that they gave me and lost 12 pounds. I have managed to keep it off by diet and exercise.

Good luck.

85236442968 profile image
85236442968

Jpburns

Best wishes as you go thru the EBRT.

I just finished the 28 doses about 6 weeks ago, then had 3 more higher dose on my abdomen as I had a couple of Lymph nodes at Periaortic level that lit up on Pet Scan.

Anyway the side effects are actually pretty light. at first there are none, then you will be felling an urgency from your bladder that will get worse as you get more doses. The urgency to pee will start working into all day (and night) not only right after the procedures. After 6 weeks it has for the most part gone away.

Did they ask you to drink some water (just short of a liter) prior to the daily procedures?? If not please ask about it as having a full bladder when they do the procedure helps protect your bladder. Now keeping that water in gets somewhat tougher as time goes on and you have to drink it closer to the procedure. (voice of experience).

I am also curious if you had a Hydro-Gel spacer put in to help protect your rectum This is rapidly becoming SOP in US. Some of the warriors that were going at the same time as me did have some bowel cramping and a bit of urgency there also, I did not have any of that. Some of them had refused the spacer as it really was not fun getting it installed. SPACE O.A.R is the one they put in me if you want to look it up.

I did find that after about dose number 18 or so, I did fell a bit blah starting about an hour after the procedure for about another hour or so. Nap helped.

I drove from my house to the Oncology Center (about 20 minutes) for every procedure, and then drove home, but near the end I was eying where I could stop to pee on the journey home.

My follow-up PET Scan is scheduled for April 8. (Eclipse Day in central US) The scan is at 9:00 am so I will be done in time for the eclipse. I will post my results with a bit of narrative.

Again best wishes for limited side effect and good results.

Jpburns profile image
Jpburns in reply to 85236442968

Yes; full bladder and empty bowels. No spacer.

Stereo1 profile image
Stereo1

Also in Atlanta area. I finish 35 treatments on Monday(7 weeks). My side effects began around week 3-4. Some diarrhea, which worried me because I had to leave my home at 6:00am to get to treatment center. Because mornings are normal time for regular BMs, I woke at 4 so I could get past this part of the day before the 45 min drive. No problems. I also experienced fatigue. No other issues. I did see a nutritionist that RO recommended and she recommended low fiber diet to help with diarrhea. I kind of followed BRAT diet and incorporated probiotics during the week.

PSA last Thursday by my MO was not detectable (<0.0). Exercise does help fatigue. The best of luck to you.

mababa profile image
mababa

No advice JP. But many shared concerns. I meet with my RO on Monday to schedule EBRT. Will be in May after my gel pack is installed, I think. I wish you the very best outcome and look forward to your subsequent reports. EBRT will offer the best bet for an extended remission, so take consolation in that.

Still_in_shock profile image
Still_in_shock

Im getting 66 Gy/33 days/2 GY fractionated per day, and I dont have a prostate!!

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