My father was prescribed ADT, abiraterone, and prednisone. He started ADT earlier before the other two were added to the regimen, about one month ago. Since then, he has been experiencing a lot of side effects, including serious hot flashes, elevated blood pressure, and headaches. He wakes up frequently throughout the night, feels lightheaded during the day, and has difficulty falling asleep. He was supposed to start abiraterone a few days ago, but he has been making excuses for not doing so, claiming it would be too harsh on him.
Would really appreciate some responses here:
1. How bad would it be if he continues with only ADT like this?
2. How serious do his side effects sound? He already saw his primary doctor for the elevated blood pressure, and that doctor didn’t think medication was needed at this point.
For reference, my father has a Gleason score of 9 and metastasis to some lymph nodes.
Written by
Healing1826
To view profiles and participate in discussions please or .
yes, those side effects are due to just one medication (Degarelix), so he’s reluctant to add more. Radiation is still the plan, but the RO wanted him to be first on HT for at least two months.
If he goes with surgery instead, would he require a lesser amount of hormone therapy to achieve same effectiveness? Asking because I can’t seem to persuade him to do the full HT (ADT + abiraterone).
No, he still needs whole pelvic radiation to get all the pelvic lymph nodes, 3 years of ADT, and 2 years of abiraterone. There's a clinical trial of 2 years of apalutamide+ADT together with whole pelvic radiation:
Perhaps your dad should switch from Firmagon (degarelix) to another ADT drug and see if that works any better. He might not have to take it as frequently. When I took Firmagon (degarelix) I required an injection every four weeks. With Zoladex (goserelin), the drug I am on now, I only need an injection every three months. Much easier to tolerate. Good luck!
I think RL2 makes a really good point. It could be that switching ADTs could give a much better outcome regarding SEs. I also have a much easier time with goserelin than other ADTs. Good luck!
Your father may want to use transdermal estrogen (estradiol) patches or gels (tE2). This will significantly reduce his hot flashes and help eliminate osteoporosis. He will likely sleep better after reducing his hot flashes. This treatment is called "estrogen add-back", because it replaces the estrogen (estradiol E2) that is always lost when his testosterone is reduced due to ADT (i.e., chemical castration).
Remember, estrogen is made from testosterone.
He should be using one, "large" estradiol patch per week (strength = 0.1 mg/24hr) or 2 pumps per day of estradiol gel (suppliers include: divigel.com and estrogel.com in the USA). If your MO won't prescribe estrogen "add-back", then ask your PCP to prescribe it. Remember, tE2 is an all-natural treatment. Y
His target for serum estradiol level should be E2 = 50 pg/ml (ask your MO or PCP to measure your Estradiol (E2) at the same time when measuring your PSA and T). More is better (see attached comparison of side effects from either estrogen or Lupron ADT treatment.)
Estrogen "add-back" is a very inexpensive treatment, compared to the standard PCa drugs.
Bob in New Mexico
Comparison of Transdermal Estrogen (tE2) vs Lupron ADT
Unfortunately some side effects are unavoidable. The abiraterone is probably not making the difference he is imagining, rather the ADT beginning to take full effect . It’s important he take everything he is being given, plus the radiation.
As Tall Allen says, enduring side effects is vastly better than his other options and may well be curative.
How much does he exercise and what kind? His ability to tolerate the side effects is highly dependent on it.
He unfortunately does not exercise much. He’s trying to do at least 30 minutes of walking every day, which I know is not a lot. He said he will exercise more when he feels better, but I don’t know if he will feel better anytime soon without forcing himself to exercise first or changing his medication.
All I can suggest is to tell him those of us who are going through it or are going through it know: As long as he is on ADT, ‘waiting to feel better’ in order to exercise is 100% not going to happen.
Exercise is the way out. Get him a trainer if you can afford it and he’s willing. A little goes a very long way if done consistently. Great luck to you!
I think he would tolerate oral Orgovyx (relugolix) better than injected Firmagon (degarelix). And that might allow him to accept adding Abiraterone.
I am 81, started ADT with Orgovyx last December, and added Abiraterone in early March. I had no side effects while on the Orgovyx alone, and minor effects after adding Abiraterone. The combination is very tolerable.
Orgovyx blocks testosterone production in the testes. Abiraterone interrupts production at 3 sources: the testes, the adrenal glands, and the tumor itself.
How does Prednisone help with ADT side effects? I thought the steroid Prednisone was only used to replace what Abiraterone suppressed. And Prednisone has its own side effects.
Prednisone has many uses in the treatment of prostate cancer including a low dose to be used with Abiraterone. Please speak with your Dad's MO in this regard. 🙏
I do not disagree with anything that has been said—some excellent advice. I want to add some research from Chap GPT about the positive benefits of diet and exercise or their worth. Here are additional examples of men who have managed and recovered from advanced prostate cancer, detailing their treatments, diets, and exercise routines:
Example 1: Robert Lynch
Treatment:
Robert Lynch was diagnosed with advanced prostate cancer and underwent a combination of hormone therapy and radiation. He also participated in clinical trials for new treatments, including immunotherapy.
Diet:
Plant-Based Diet: Robert switched to a predominantly plant-based diet, incorporating a wide variety of vegetables, fruits, whole grains, and legumes.
Healthy Fats: He included sources of healthy fats such as avocados, nuts, and olive oil.
Lean Proteins: He focused on lean protein sources like fish and chicken while minimizing red meat and processed meats.
Exercise:
Aerobic Exercise: Robert engaged in daily walks and cycling, aiming for at least 30 minutes of moderate aerobic activity most days of the week.
Strength Training: He included resistance training exercises twice a week to maintain muscle mass and strength.
Yoga and Stretching: He practiced yoga and stretching exercises to improve flexibility and reduce stress.
Example 2: John Smith
Treatment:
John Smith was treated with surgery to remove the prostate, followed by hormone therapy and chemotherapy to address metastatic cancer.
Diet:
Mediterranean Diet: John adopted a Mediterranean diet rich in vegetables, fruits, whole grains, and healthy fats like olive oil and nuts.
Antioxidant-Rich Foods: He focused on consuming foods high in antioxidants, such as berries, tomatoes, and green tea.
Low-Sugar Intake: He minimized sugar intake and avoided sugary beverages and snacks.
Exercise:
Aerobic Activities: John committed to regular aerobic activities, including swimming and brisk walking, aiming for at least 150 minutes of moderate activity per week.
Resistance Exercises: He performed resistance exercises using free weights and resistance bands twice a week.
Mind-Body Practices: He practiced tai chi and meditation to help manage stress and improve mental well-being.
Example 3: Michael Milton
Treatment:
Michael Milton received a combination of radiation therapy and hormone therapy. He also participated in a clinical trial for a new targeted therapy.
Diet:
Balanced Diet: Michael maintained a balanced diet that included a variety of vegetables, fruits, lean proteins, and whole grains.
Low-Fat Dairy: He included low-fat dairy products like yogurt and milk in his diet.
Omega-3 Fatty Acids: He added sources of omega-3 fatty acids, such as fish and flaxseeds, to his diet.
Exercise:
Cardiovascular Exercise: Michael engaged in cardiovascular exercises like jogging and biking, aiming for 30-45 minutes of activity most days.
Strength Training: He incorporated weight lifting and body-weight exercises into his routine twice a week.
Pilates: He practiced Pilates to enhance core strength, flexibility, and overall physical fitness.
Example 4: Steve Baker
Treatment:
Steve Baker underwent a combination of surgery, radiation, and hormone therapy. He also received chemotherapy to address metastasis.
Diet:
Whole Foods Diet: Steve focused on a whole foods diet, avoiding processed foods and emphasizing fresh, natural ingredients.
Phytonutrient-Rich Foods: He included foods rich in phytonutrients, such as cruciferous vegetables (broccoli, cauliflower) and berries.
Hydration: He ensured adequate hydration by drinking plenty of water and herbal teas.
Exercise:
Daily Walks: Steve took daily walks, aiming for at least 10,000 steps per day.
Gym Workouts: He attended the gym for strength training and cardio sessions three times a week.
Swimming: He incorporated swimming into his routine for low-impact, full-body exercise.
These examples illustrate how men with advanced prostate cancer can benefit from a combination of medical treatments, healthy diets, and regular exercise routines tailored to their needs and conditions. These strategies not only help manage the disease but also improve overall quality of life (Prostate Cancer Foundation) (Prostate Cancer Foundation) (Mayo Clinic Connect) (Memorial Sloan Kettering Cancer Center).
You don’t know unless you try. Was personally on Xtandi for 24 months and I said enough is enough with all the debilitating effects and doctor put me on Zytiga and what a difference. I’m doing exceptionally well on Zytiga. Day and night with very little side effects and it’s all working because my numbers keep showing downward every three months.
I am also a daughter. My father is 81. Do you have a palliative care Dr? If not I highly encourage him to find one. My father loves his. At one of our earlier appointments she asked how things were going and he complained about the hot flashes. She said "aren't they a bitch? I am in menopause and having the same thing, but I take something for them and think they would work for you. Do you want to try what I am taking? And then we added another drug. This woman is amazing and can recommend anything. When he started with incontinence but pushing back with depends, she asked what concerns he had. He was worried that if he was out with his friends our daughters it might be very embarrassing. So she said let me ship you some depends and.just wear them when you go out so it eases your mind and you can enjoy your friends. That got him used to it and when he started having too many accidents at home he started wearing them all the time. I have learned there are a lot of drugs for the side effects and a good palliative care Dr can help you.
Lupron also gave me many side affects. I am Gleason 9 also, no Mets. I did the 44 IMRT full pelvic radiation treatments. 19 months of ADT. Then stopped all of it. I never took zytiga because of the Lupron side effects. I didn't want any more problems. 6 months after stopping ADT and 1 year after radiation my PSA is at 0.16
4 years of Lupron is enough,..stopped 6 months ago ….My Lupron shots were 3 month injections ..It’s taken 6 months for the 3 month shot to get out of my system….yes my psa is way up (131) but starting BAT with zytega or Xtandi in a couple of weeks.,,,Absolutely no more Lupron ever for me….quality of life is more important than just existing …
It took me 7 years to finally get rid of Lupron -- it was literally driving me crazy. My MO was freaked when I requested castration (he actually crossed his legs when I first mentioned it, LOL). So now my testosterone is very low and no Lupron or pressure from oncologists to take it. I wish I had had the orchiectomy much earlier!
For sure they all seem to push Lupron…If they were made to take one Lupron injection before they could prescribe it, then maybe they’d understand just how debilitating it can be.,…Congrats on winning the heralded “No-Ball” Prize……Lol
been taking abiraterone since 2021.. hot flushes will lessen and eventually disappear. My blood pressure went up but is treated with meds.. overall, the side effects can be managed ..the benefit outweighs some discomfort.
I too delayed going on Abiraterone. That was over 2 years ago. I am 7 yrs 3 months into stage 4. My PSA dove from about .20, to .01 for these 2 years. No growth indicated by scans, and though I hate the thought of Zytiga.... I love living.
Enjoyed reading your and others post. It is really amazing how supportive this group is and how caring not to mention the willingness to share their knowledge and offer suggestions.
Thanks guys for trying but it seems that this father is letting fear of the unknown to cloud his judgement and hasten his suffering and death. Unfortunately that realization may come to late for him.
I wish we could change this but what is the old saying “you can lead a horse to water….”.
His quality of life or fear of the unknown may be the deciding issue for him and all we can do is respect that.
To read the word CURE in this group and not just once but twice is a real shock. Since when an Advanced metastatic PC level 4 is being 'cured' by taking a 'whole pelvic radiation to get all the pelvic lymph nodes, 3 years of ADT, and 2 years of abiraterone.' (No mention of Prednisone that always goes with abiraterone) Someone needs to rest and take a vacation as the above does NOT exist. All approved treatments to date are PALLIATIVE.This being said, I tried the daily Abiraterone/Prednisone combo along with the each three months Lupron injection. The SE were so nasty that made me stop the abiraterone/prednisone just three months after starting. I continued getting Lupron injections once every three months for almost 2 years. I decided to stop it almost two months ago. I can tell I am starting to somehow feel normal, slowly. Fatigue, night sweating, weight gain, no strength, muscle cramps and breast enlargement are diminishing every day. If and when I need to get back on a palliative treatment, I am definitely going to be more careful and choose the less toxic of all poisons available. I am 60 years old and choose QOL over the misery of secondary medicine effects. How old is your Dad?
“Curative” is a medical phrase doctors might use with a set of treatments. My radiation oncologist said “I have educated the patient on the goal/intent of therapy, which is Curative.” I had 28 fractions of radiation (pelvic, prostate), have been taking Orgovyx since December, and have 2 years of Abiraterone and prednisone ahead of me (started in May). Will this “cure” me? I dunno. But it might keep me from dying from the cancer.
if the spread of the cancer is confined to the pelvic lymph nodes, then a cure is possible with 2-3 years of ADT, 2 years of Abiraterone (+ prednisone), Radiation to the prostate and all the pelvic lymph nodes, with extra radiation to the known metastatic lymph nodes. I had Gleason 5+4 and 10 invaded nodes, and 6 years later my psa is barely detectable (0.029), my UCSF doctor says I should assume that I’ve been cured
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.
Orgovyx vs. Lupron, (with Enzalutimide or Abiraterone).
Next Step Docetaxel after Abiraterone & Xtandi failed. 
Abiraterone and fatigue in 78 year old dad
