Radiation and ADT tips to prepare or what you wish you knew to prepare

Posted by albcan @albcan, Aug 19 12:58pm

Hi Everyone,

I’m getting ready to start salvage radiation and hormones and was hoping to get some advice on anything I should be doing to prepare.

For background had an RARP in Dec 2024 Feb 25 and May 25 PSA was undetectable but now in Aug has jumped, have another PET scan set for next week then will start new treatments.

I was diagnosed stage four initial diagnosis with metastatis in the lymph nodes and some were removed during the operation but couldn’t get them all and there were positive margins also.

Don’t know how many sessions yet will know after the scan but have been told two years “to start” on Hormones….

I’ve read a lot about the side effects of both the hormones and radiation and understand we are all different so will handle whatever the side effect are when they come but was hoping to learn tips or tricks you learned from experience going through the radiation and hormone treatments that you wish you knew before you started and or advise on what to do over the next few weeks to get ready physically or mentally.

Thanks very much for any feedback, this forum is incredibly helpful.

Al

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I had seven weeks of salvage radiation. I had no side effects at all and went to work immediately after since I had the treatment at about 9 o’clock in the morning.

Some people do get fatigue or urinary issues, but I never noticed either problem.

As for ADT that that’s another story

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.

I have an embrlabs.com wave product (wave 2). I’ve used it for Over three years now. It’s like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode . Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device . When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.
https://embrlabs.com/
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

REPLY

The key to avoiding side-effects from radiation is less about our differences, and more about avoiding hitting nearby otherwise healthy tissues and organs. But, since you’ll be getting salvage radiation, unless you know exactly what and where to target, that’s gonna be difficult.

The key to avoiding side-effects from hormone therapy is (once again) less about our differences, and more about offsettin the metabolic side-effects of low testosterone. A robust resistance-training program will minimize many of the undesirable side-effects of ADT. It’s important to start the exercise program well before starting the ADT.

REPLY

I had 5 weeks IMRT plus six months Orgovyx ADT. IMRT ended in May and ADT ended about a month ago. Only residual side effects are urinary frequency and intermittent fatigue but it lasts only a minute or two and is often triggered by extreme heat. Otherwise as others have said, Orgovyx seems to be the current gold standard for ADT with the least side effects

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Knowing what I know after going through salvage I would ask/demand something for bladder urgency and a space ore block up front. Blowing up on the table is degrading and even more degrading when doctor demands you drink and get back on the table and you blow up again. I hate Rad doctors and techs.

REPLY
Profile picture for chippydoo @chippydoo

Knowing what I know after going through salvage I would ask/demand something for bladder urgency and a space ore block up front. Blowing up on the table is degrading and even more degrading when doctor demands you drink and get back on the table and you blow up again. I hate Rad doctors and techs.

Jump to this post

Radiation nurses gave me a penile clamp because, as you say, drinking enough and still being able to hold it through radiation is really difficult. I would put it on while I was drinking and about an hour before treatment appointment, since they recommended not using it more than two hours. There were still two times (out of 44) that my bladder wasn’t full enough for treatment and I went back to the waiting room until the urge was strong.

REPLY
Profile picture for jeff Marchi @jeffmarc

I had seven weeks of salvage radiation. I had no side effects at all and went to work immediately after since I had the treatment at about 9 o’clock in the morning.

Some people do get fatigue or urinary issues, but I never noticed either problem.

As for ADT that that’s another story

Due to their different mechanisms of action. ADT which includes Orgovyx, Firmagon, Lupron, Eligard, Prostap, Camcevi, Lucrin, Zoladex, Trelstar, Pamorelin, and Decapeptyl can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Not all of these side effects occur to everyone on the drugs. Most of them are just things you have to be aware of and circumvent. I walk on the track twice a day, 1 mile at least, to help prevent bone weakening, fatigue and muscle deterioration. I also go to the gym three days a week (usually) and spend an hour with all different types of weight exercises. One thing that happens is people get a beer belly from the muscle deterioration, I do a lot of sit-ups to offset that.

Some people get depression but it is not common. It is easily treatable, according to people that have reported it on here and on Online Meetings I have participated in. If he has that problem Come back and ask for help, Or see a psychiatrist about doing something to relieve the depression.

Some people get no hot flashes at all. Others only have a few hot flashes and they are very minor. I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.

I have an embrlabs.com wave product (wave 2). I’ve used it for Over three years now. It’s like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode . Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device . When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.
https://embrlabs.com/
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Tofu does have properties similar to endocrine hormones but a lot weaker. Can’t hurt to try it. Seems they ate it daily.

According to a doctor that spoke to a recent webinar, all people on ADT should be taking bone straighteners. I took Fosamax for six years and I’m now on Zometa. That along with calcium taken daily helps keep your bones strong. Ask your doctor about this.

Jump to this post

Thanks so much Jeff, lots of really good information here as usual. I will investigate the Emberwave and ask about Fosamax and or Zometa right away.

Looking forward to getting past this next set of treatments.

REPLY
Profile picture for brianjarvis @brianjarvis

The key to avoiding side-effects from radiation is less about our differences, and more about avoiding hitting nearby otherwise healthy tissues and organs. But, since you’ll be getting salvage radiation, unless you know exactly what and where to target, that’s gonna be difficult.

The key to avoiding side-effects from hormone therapy is (once again) less about our differences, and more about offsettin the metabolic side-effects of low testosterone. A robust resistance-training program will minimize many of the undesirable side-effects of ADT. It’s important to start the exercise program well before starting the ADT.

Jump to this post

Thanks Brian, I have never been big on weights or resistance training, have done plenty of exercise but mostly cardio type stuff but will start doing weights now and hopefully put together a program that I can keep going through the treatments and beyond.

Wish you the best in your journey.

Thanks Again!

REPLY
Profile picture for chippydoo @chippydoo

Knowing what I know after going through salvage I would ask/demand something for bladder urgency and a space ore block up front. Blowing up on the table is degrading and even more degrading when doctor demands you drink and get back on the table and you blow up again. I hate Rad doctors and techs.

Jump to this post

Thanks Chippydoo,

Very good information here, I will definitely ask about both of those right off the bat.

REPLY
Profile picture for jime51 @jime51

Radiation nurses gave me a penile clamp because, as you say, drinking enough and still being able to hold it through radiation is really difficult. I would put it on while I was drinking and about an hour before treatment appointment, since they recommended not using it more than two hours. There were still two times (out of 44) that my bladder wasn’t full enough for treatment and I went back to the waiting room until the urge was strong.

Jump to this post

Thanks so much Jime51

Beginning to understand the process and how all of this works. I will talk about the clamp with my provider as well.

Best Wishes! Al

REPLY

Al,
Firstly, I wish you all the best with your treatment. I am now 10 months into my treatment for advanced prostate cancer. I had IMRT and seeds 7 1/2 years ago, recurrence in February last year (2024), localized to pelvic area. I eat very well (Mediterranean and anti-inflammatory diet) and exercise a lot. Mayo (Dr. Kwon) diagnosed metastatic cancer last year and scheduled radiation and ADT (Eligard) + Zytiga. I had a bit of a stomach issue at the end of the radiation cycle (15 treatments over 3 weeks), but that was it. Fast forward to Feb this year (5 months later) I had a heart attack and had 4 stents inserted. Cardiologist discontinued the Zytiga due to its potentially negative impact on my heart (known possible side effect). Dr. Kwon concurred. - Track your heart health closely, especially if you have a family history (which I do). Due to my exercise history, I had little heart damage. Now I am also on a bunch of heart meds (Beta Blockers, Cholesterol lowering, blood pressure lowering and anti-platelet) meds. Hence, it is difficult to know the effects of ADT vs the heart meds. Hot Flashes (clearly from ADT since these started before my heart attack), fatigue (started with ADT, but got worse after the heart attack), and sleep issues. My solution is built around the four most stressed remedies: Sleep, Exercise, Diet and Social Activity/Stress management. These are very interrelated. If I have a light dinner with no alcohol and good exercise, I can sleep better. If I sleep better, I feel more like getting going during the day with exercise. Social activities help with stress but I need to manage them to keep the stress out of the equation. Exercise, for me, needs to be more than casual walking (I do that with my wife and my dog 1.5-2 miles on hilly terrain 5-7 days/week). I mix in more intense exercise 3-5 days/week with weights, rowing or paddling (hard enough to get my heart rate to 138 or so, which is all I can do with the Beta Blocker). This has had a big impact on reducing my fatigue - I now can make it through the day without that mid-day slump. It's all a huge effort, but luckily, I'm retired so I have the time for it all.

REPLY
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