Radiation with Lupron side effects - Advanced Prostate...

Advanced Prostate Cancer

23,587 members28,932 posts

Radiation with Lupron side effects

Gibronis profile image
46 Replies

Hello all. I am wondering if I could get some feedback from the group in reference to radiation therapy combined with Lupron.

Without getting into too much detail, It came back after 22 years. Grade 1 Gleason 6.

PSA was less than 0.1 until after the 10th year where it started to slowly rise. Went up and down. So from 2003 to 2025 it went from 0 to 0.4

Recent PSMA scan negative no recurrent disease .

Options are :

Keep watching it

Radiation only

Radiation with Lupron. Are there any other drugs other than Lupron to be used?

My question is how are the side effects of both Radiation and Lupron?

Finally, does anyone know if Proton Therapy is safer than the traditional Radiation?

Thanks all. :)

Written by
Gibronis profile image
Gibronis
To view profiles and participate in discussions please or .
Read more about...
46 Replies
Don_1213 profile image
Don_1213

You haven't given us enough information (nor does your bio) to even begin to think about this. You stated "Recent PSMA scan negative no recurrent disease ." and then asked about radiation. Exactly what are they going to radiate?

It's been 10 years - and you're still below 2.0PSA.. (0.4?) - I again have to ask - what are they going to radiate?

If your original treatment was a RP - then the 0.4 might be some cause for concern - which at this point would probably be watching and waiting to see if it continues up, or if it was just a blip. Personally I certainly wouldn't make any sort of decision based on 1 PSA reading (and not a particularly high one even if you did RP, and insignificant if your treatment was originally radiation.) And I'd certainly want another PSA test (even if out of pocket - it's not expensive) along with a T test before even thinking about doing anything.

Photon vs Proton - no particular advantage to photon except the selling points the treatment centers like to trot out when you drop by (BTDT). Have you had any radiologist not associated with a proton center advise getting proton?

I think you're perhaps over-reacting to a number on a chart.

Gibronis profile image
Gibronis in reply toDon_1213

Thanks for your feedback I do appreciate it and really apologize if I did not give you enough info.

I asked the same question to the oncologist. He indicated the prostate bed would be radiated. I had surgery in 2003 and the PSA was zero until 2013 in which it bounced going no higher than .03. Then two recent consecutive tests 0.48 then dropped to 0.42. My urologist indicated the watch and wait approach but suggested if I wanted to see a Radiologist which I did. Again, sorry all for not giving you all the info.

stealthrider profile image
stealthrider in reply toGibronis

Salvage radiation is not bad, maybe some fatigue. ADT is tougher. I've been on it for close to 20 months now. Many side effects. My 2 cents is that with biochemical recurrence after that amount of time radiation should include prostate bed and pelvic lymph nodes. My father in law had recurrence after 10 yrs, that was ~ 10 yrs ago, no PSMA PET available for him back then, the standard of care was radiate prostate bed only to later find out he had it in a pelvic lymph node. Now it has metastasized throughout his body. Good luck.

Gibronis profile image
Gibronis in reply tostealthrider

Thank you very much!

Gibronis profile image
Gibronis in reply toDon_1213

The radiologist I saw was not associated with Proton Therapy. I read that Proton was less destructive on tissues. Hence my question. Thanks

Tommyj2 profile image
Tommyj2 in reply toGibronis

I hope there is some truth to proton tx being less destructive than photon as I just recently completed SBRT with proton…..space oar placed as well…….no SE’s yet.

Quite a few SE,s with lupron but none that would require stopping it…major fatigue,harder to concentrate,muscle wasting,loss of all body hair…..22 lb weight gain immediately, elevation in glucose but not to diabetic proportions yet……**luckily no hot flashes. Pain in the butt overall but effective so far(psa undetectable)…….wont know if the proton therapy was effective for quite a while……good luck to you.

Gibronis profile image
Gibronis in reply toTommyj2

Thank you!

Tall_Allen profile image
Tall_Allen

If it were me, I would just watch it. But you're not me, so you have to do what's right for you. My thinking is that if a bit of pattern 3 got left in the prostate bed, pattern 3 progresses very slowly, if ever (it can grow and form a tumor, but it seldom changes grade), and most (but not all) men on active surveillance with pattern 3 only, have stayed on it without grade progression for 20 years so far.

With watching, there are no side effects of radiation, but there is the anxiety of knowing something is still there.

Gibronis profile image
Gibronis in reply toTall_Allen

I appreciate your kindness and feedback. It's very confusing and stressful since after 22 years I thought I was done! How naive!

Tall_Allen profile image
Tall_Allen in reply toGibronis

I'm going on 15 years - maybe I'm naive too.

Gibronis profile image
Gibronis in reply toTall_Allen

My real concern is will it become a metastatic.

Tall_Allen profile image
Tall_Allen in reply toGibronis

I wrote this article about that:

prostatecancer.news/2017/11...

Gibronis profile image
Gibronis in reply toTall_Allen

Really! I will read! May I ask you additional questions if I have them?

Tall_Allen profile image
Tall_Allen in reply toGibronis

Of course!

Gibronis profile image
Gibronis in reply toTall_Allen

Thanks! Can I assume you have been at 0 for the last 15 years?

Tall_Allen profile image
Tall_Allen in reply toGibronis

I had radiation, so it is never at 0.

Gibronis profile image
Gibronis in reply toTall_Allen

Ah yes I see. Thanks again. I need to make a decision and its sure difficult.

Abcsoup73 profile image
Abcsoup73 in reply toTall_Allen

Good article Tall_Allen!

Gibronis profile image
Gibronis in reply toTall_Allen

Excellent article. I have an appt. with my Urologist to discuss findings. Funny urologist says monitor, radiologist says radiate.

icanwintwice profile image
icanwintwice in reply toTall_Allen

I wish knew what you guys are doung right?!

ron_bucher profile image
ron_bucher

Each guy's body reacts differently to the same treatment(s). For me, Lupron was a lot worse than either of my two radiation treatments. Lupron turned me into a couch potato even though I've always exercised regularly to keep in good shape, whereas with radiation alone I could do cardio exercise regularly for 90-120 minutes at a time. Radiation weakened my anal sphincter/rectum slightly but it doesn't require anything other than hitting the restroom a little sooner than I used to when the urge hits.

My first radiation was post-RP salvage radiation done without any ADT and it gave me 7.5 years of undetectable PSA.

Gibronis profile image
Gibronis in reply toron_bucher

I appreciate your feedback!

Gibronis profile image
Gibronis in reply toGibronis

If I may, how long did the Lupron effect you?

ron_bucher profile image
ron_bucher in reply toGibronis

I stopped Lupron after 9 months. It took a year for my testosterone to get back to normal.

Bronzee profile image
Bronzee

just watch it and observe , if it were me.

Gibronis profile image
Gibronis in reply toBronzee

Thank you very much. May I ask why you think that? I am trying to get as much feedback as possible and am afraid it will spread.

Mgtd profile image
Mgtd

Your age is a factor. For example at 80 what I might do may not be what someone at 60 might do. In addition what is your current health? That plays into the decision. Not a simple decision. Good luck!

Gibronis profile image
Gibronis in reply toMgtd

Thanks I am 73. I ride my bicycle approx. 150 miles per week spring and summer. Train on the bike in the winter 5 days a week and lift weights 5 days a week. Thanks again

Hawk56 profile image
Hawk56

Given what you describe for a clinical history, seems low risk...

There are choices...

Continue to actively monitor with labs and consults, what distance apart, if you are concerned about progression, maybe every three to six months, discuss with your medical team.

Do something...when, with what, for how long...?

Treat the prostate bed only.

Include the WPLN is the radiation treatment.

Add short term ADT, say six months. Then the question is which ADT, agent, do you add an ARI...

Simply do doublet therapy, ADT +ARI, no radiation...

I would discuss with your medical team about what PSA they would consider imaging at. We know generally that the higher one's PSA, statistically the greater the chances of a PSMA PET locating the recurrence and informing that decision. Where is the sweet spot, some say .5-1.0, others are willing to image below that, some wait for an even higher PSA. The question you may want to discuss with your medical team is will imaging inform a treatment decision. As an example, if your medical team's current approach and yours) is to radiate the prostate bad only, imaging could alter the treatment plan if it showed recurrence outside the prostate bed. You can also discuss with your medical team any risks they see with waiting for the PSA to rise before imaging.

As others have indicated in their response, I would continue to actively monitor, labs and consults every three to six months, image at some point in the future, accumulate more clinical history - PSADT and PSAV, maybe genetic testing, and then decide. In the meantime, I would enjoy life off treatment.

Kevin

Clinical History
DannyMan profile image
DannyMan in reply toHawk56

I would definitely do the kitchen sink approach- it’s a choice, but seeks crazy (not being snarky).

I’d wait and watch.

Gibronis profile image
Gibronis in reply toHawk56

Thanks for all the information!!! You are very kind. I am trying to digest all of this and its confusing. I suppose I am lucky in the sense that I am a grade 1 gleason 6, I suppose.

SsgCulldelight profile image
SsgCulldelight

Hey cutest know that radiation is like a slow burn and has its own side effects unfortunately none of them are good. Like chemo it basically kills Celsius and is indiscriminate the most is hopefully your good cells regenerate faster than the mutated cells, and if they get it all there no guarantee the bad cells won't come back so 50 50. Ad will arrest your cache cells effectively making them Dornant which worked for me, but everyone is different so again I say 90 10 for many years, maybe forever. Lupton with nilutimide works well with some uncomfortable dude effects, sweating hot flash some nausea but u get used to it or I'll say it's tolerable. Chemo and radiation by fast have the worst affects, hair loss, low energy, nausea, reflux skin lesions, depression anxiety and a host of others but many people freak with it with a level of difficulty in sure, so it's your preference really, you may not get this affects and maybe they are not so bad for you. For me it comes down to your drive, your spirit positive affirmation and especially your outside influences, people have diffrent energies and we are subject to them which can and will impact how you feel and think about yourself so that said, surround your self with positive people that are doing positive things, you don't need the pity or empathy pot that's a tough road to travel my friend. Hope this helps and stay positive, you already beat this and are winning, you have to walk in it like you own success. Love n light friend.

SsgCulldelight profile image
SsgCulldelight in reply toSsgCulldelight

Forgive the typos please.

j-o-h-n profile image
j-o-h-n in reply toSsgCulldelight

You're forgiven, but not by much...........🤡

Good Luck, Good Health and Good Humor.

j-o-h-n

SsgCulldelight profile image
SsgCulldelight in reply toj-o-h-n

Super J wassup bro🤣👍👍

Gibronis profile image
Gibronis in reply toSsgCulldelight

Thank you for that inspiration!

London441 profile image
London441

Agree there appears to be no reason to act now, but if/when you do, know that side effects from Lupron are nearly always much more noticeable and varied than those from radiation. Modern radiation is well tolerated by most. I’ve had no lasting effects for 5 years.

Again, Lupron is the main driver of side effects. However, shorter courses are fairly easy -beyond 6 months or so it becomes gradually more challenging.

Lots of exercise, especially weight training is your best intervention on the sides. It’s vital when getting older as it is, but Lupron slows metabolism, adds fat gain and wastes muscles. This makes for fatigue that can overtake your will to exercise and compound the effects. Do not ignore this simple but important matter!

Gibronis profile image
Gibronis in reply toLondon441

Thanks. I ride my bike in the spring and summer 150 miles per week and train in the winter plus lift 4 days a week. I cringe when I think of the effects...but if I can nail this.. I thought of only Radiation.

MelodyCat profile image
MelodyCat

My only comment regarding radiation doesn’t directly apply to you but may be helpful. They found a lesion on my L4 and was receiving Lupron. Had SBRT with zero side effects. Salvage or broad based radiation would likely be different and even SBRT would vary depending on location. As Tall Allen said, if it is low grade and not a bright PSMA indication, patience may be a virtue.

Gibronis profile image
Gibronis in reply toMelodyCat

I know. It scares the crap out of me. Thanks for the feedback it is greatly appreciated!

dhccpa profile image
dhccpa

I just finished radiation in January after 6.5 years on Lupron (still on it). Main thing from the combo was another level of energy drop over and above the Lupron--noticeable but manageable.

Radiation does have its own set of side effects, like urinary and digestive issues, skin issues, etc.

Gibronis profile image
Gibronis in reply todhccpa

Thank you for your feedback I greatly appreciate it and wish you only the best! Going be a tough decision.

j-o-h-n profile image
j-o-h-n

Would you please update your bio. All info is voluntary, but it helps you and helps us too.

Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

Gibronis profile image
Gibronis

Yes of course.

Teacherdude76 profile image
Teacherdude76

Grade 1? I assume Stage 1! I had G9 stage IIc aggressive 10 yrs ago Radiation & lopron. No bothersome side effects.

Gibronis profile image
Gibronis

Yes Grade 1=stage 1 Gleason 6. Teacherdude76, Thank you!!!!!!

Not what you're looking for?

You may also like...

Side effects of Lupron?

Seven years after radiation therapy my psa started rising. Biopsy showed cancer in one sample out...

Lupron working without side effects?

Hi fellow members, and apologies to those whose reactions to Lupron are bad. I started taking it a...
billfenley2 profile image

Radiation Side Effects

Does anyone have any unusual suggestions to combat extreme tiredness post radiation treatment? I’ve...
ewhite999 profile image

Enzalutamide/Xtandi monotherapy as ADT with fewer side effects than Lupron

Enzalutamide monotherapy can improve the quality of live for advanced prostate cancer patients....
GP24 profile image

Radiation treatments and Lupron therapy

New to group. I just finished 45 days of prostate radiation with little to no side effects. My...
Suds4me profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.