Orgovyx+Erleada (Apulatamide)

The fact that he’s not having the fatigue side effect from Orgovyx is really good. The thing is, however, There are other side effects that will happen, but don’t cause noticeable issues right away. He will find that he gets a belly or a bigger belly because of the loss of stomach muscle muscles. Other muscles are going to start to deteriorate and doing weightlifting can keep what he has. His bones will get weaker. He should get a DEXA scan immediately to find out how good his bone density is. It will become less and less dense over time, Some people need to have bone strengtheners if the scan doesn’t show they’re in good shape and have osteopenia or osteoporosis.

Some people get a lot of fatigue with Erleada. (Apalutamide) Doesn’t happen to everybody. It also can make the brain fog worse. He really ought to ask the doctor about getting Nubeqa (Darolutamide) Instead of Erleada. It doesn’t pass the blood brain barrier so you don’t get brain fog and almost no one reports they have fatigue with it. It is a much better drug Since almost no one reports side effects from it. I have told dozens of people to switch to Nubeqa and almost everyone has thanked me because the drug was so much easier to deal with.

I've been on ADT (currently Orgovyx) + Erleada for 5 years. Most of the side-effects come from the ADT, but Erleada does have a small risk of brain fog and heart rhythm issues (the vast majority won't experience them).

More importantly, like the other -lutamides, Erleada has potential interactions with many other meds — even something as simple as Ibuprofin — so you or he will need to be vigilent about checking everything. It also means he can't take the standard COVID meds like Paxlovid, so it's doubly important to stay up to date on his vaccinations.

@northoftheborder May I ask you how is your quality of life through the years?Is there space for activities and some normalcy?

Hello, I’m new here. My husband is expected to start Orgovyx with abiraterone acetate and prednisone, but we’re still waiting for insurance pre-authorization. We’re also awaiting imaging (contrast CT and PET) to determine whether the cancer has spread beyond the bladder; those scans have been delayed due to complications from his TURBT and nephrostomy.

As I’ve been reading about side effects, I’m unsure about a few things:
- I don’t see much mentioned about bone density loss with Orgovyx, but I believe it was mentioned here as to be expected, is that true with just the Orgovyx or a specific combination of drugs?
- Is Nubeqa the same medication as abiraterone acetate, or are they different?
- Is driving restricted while on Orgovyx, or is it based on how the person feels (fatigue, dizziness, etc.)?

My husband plans to keep working as much as possible. He’s always exercised daily (alternating treadmill and weights) and wants to continue if he can. Are there any commonly recommended supplements to consider with this treatment (for example calcium and vitamin D), and any general guidance on what to look for?

We’ve also been trying to optimize his diet: mostly plant-based or non-dairy options, reduced salt and sugar, mainly poultry and fish (no red meat, pork, or processed/cured meats), whole grains/whole foods, and no alcohol. I think the glass of wine with a meal is the hardest part of the diet for both of us.

My main questions are:
1) What might he feel like once treatment starts—what should we realistically expect?
2) Are there any other practical steps or general suggestions I should consider to better support him?

Thank you for your help!

@goutzi My quality of life is pretty good, all considered. The main issue was that the metastasised tumour compressed my spinal cord in 2021 and left me paraplegic for a long while — recovering from that was (and still is) more of a challenge than dealing with the relatively-minor side-effects from long-term Orgovyx and Erleada use. I'm just grateful that I can walk and do most normal activities again, including picking up my baby grandson.

@mimimaria ‘
Abiraterone There’s one of the cheapest drugs you can get for prostate cancer. With insurance it’s probably $25-$50 a month at the most. If you have heart issues, then you don’t want to be on this drug. It caused me to have high blood pressure, Which I never had before, And also gave me five afib Event events each one landing me in the emergency room. It also gave me a lot of hot flashes. I was on it for 2 1/2 years and was only an undetectable for one month. When I stopped taking it, I had a metastasis in my spine. I had to have zapped with radiation. I moved on to Nubeqa Which just kept me undetectable for the last 34 months after 16 years with prostate cancer. It is the best drug of them all but costs over $12,000 a month. If he has Medicare part D. the most he’ll pay for in a year is $2400 next year. After that, all prescription drugs are free.

Orgovyx Is an ADT drug like Lupron and many others (listed below). It produces the testosterone to below 20 and that causes the bones to become weaker. Your husband should get a DEXA scan immediately to find out how his bone density is. Over a longer period of time ADT drugs, can really damage bone strength. I’ve been on ADT for nine years Lupron For six years and Orgovyx For three years. One year after starting Lupron I was put on a bone strengtheners, Fosamax, I Pill you take once a week. After six years, I had two years of Zometa infusions. But it kept my bones fairly strong I have osteopenia, The milder form of osteoporosis.

After nine years of being on the ADT drugs, I have been driving all the time without any issues. It does cause fatigue for some people, but not too much. Some people have reported that the brain fog caused by the drugs makes it difficult to get where they’re going, confusion about directions. I’ve never found that to be true. I have never had a problem driving in a big city. This is seldom a problem for people.

He should definitely continue to exercise just like he’s been doing. That can defeat the fatigue Some people get. I walk a mile twice a day as fast as I can go and I go to the gym three days a week to do weight exercises. ADT drugs deteriorate your muscle so you need to exercise To maintain strength.

What you’re doing with diet is ideal. Diet Really helps withprogression Free Survival.

Here are some information about what ADT (Orgovyx Etc.) Does to someone.

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
Joint pain
Sleep Problems
Heart damage possibilities
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 fast on a 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. If you have this problem, we can give you a list of drugs that can stop it. Ae doctor at a recent conference, put out a big list. I wear a Embrlabs.com Wave 2 device. It can reduce the hot flashes during the day and at night pretty much stops them completely. Megestrol has worked for some people.

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, many people on ADT, if they are staying on ADT for an extended period or have become castrate resistant 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.

I have never gained any weight while on ADT. I get on the scale every morning and base what I eat on what I weigh. Skip lunch at times. Some people gain a lot of weight. The average is 5 pounds but some gain more and some gain none. Be aware that because you are on ADT you will find it very difficult to lose weight. That is one of the problems when you have a very little testosterone, you really have to work for it. Cutting out meals for weight loss often backfires by causing your metabolism to slow down and promoting fat storage as the body enters a survival-oriented "conservation mode". It leads to nutrient deficiencies, intense hunger causing overeating later, energy crashes, mental fatigue, and potential muscle loss.

@goutzi
I’ve had prostate cancer for more than 16 years and I lead a pretty normal life. You would never know I have it unless I told you. I go to the track twice a day every day and walk a mile as fast as I can go. I go to the gym three times a week and exercise with weights. And 78 years old and people think I’m much younger because I’m so active.

Here’s a short history so you can see that I’ve had a lot of treatments, but you would never know it from the way I live.

2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 34 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on the L4 in my spine zapped with SBRT radiation 3 years ago. I did not find out I was BRCA2 Until four years ago. That’s why it keeps coming back, I’ve had four reoccurrences. I’m 78 now, 79 in a couple of months.

@jeffmarc
Thanks so much for your comments re: Nubeqa. I was recently diagnosed w/ PC recurrence 10 years after RP (2016) w/ DaVinci robot. The PSMA Petscan detected 2 pelvic lymph nodes w metastasis, and a paraesophageal lymph node possibly expressing metastatic disease. An osteolytic lesion on left clavicular head consistent w/ disease, and mild uptake in LF. 4th rib w/o CT correlate n LF. inferior pubic ramus (F/U imaging recomm). I had 3 SBRT radiation Tx. on clavicle and have been on Nubeqa for 1.5 months. I reported to med. oncologist that I prefer Nubeqa to Orgovyx since I am 78 and already have osteopenia. He agreed. Again thanks for your experiences & comments re: PC metastasis, etc.

@minimaria, you said your husband is about to start Orgyvx and Abiraterone/prednisone (A/P).
Jeff's detailed response on living with ADT is a good compilation of possible side effects a man faces on ADT.
This may be late in the game for you, but your husband may want to consider the Estradiol patch instead of Orgyvx. The patch avoids many of the side effects of ADT (indeed, it strengthens bones!).
I have been on the patch and A/P since June and my life is pretty much back to normal (not counting increased incontinence from the radiation treatment). I bike 12-20 miles most days and then go to the gym (however, I no longer try 30-40 miles due to decreased stamina and muscle reduction). I have had zero hot flashes, although my breasts have gotten slightly larger. I realize I am lucky and I think my exercise regime for the last few decades game me an advantage. Your husband's exercise regime hopefully would do the same, and, of course, he should keep it up as much as possible, no matter which drugs he chooses.
If you are interested, google the Estradiol Initiative to learn more.
In any event, good luck to both of you as you face whatever treatment regime you choose.

@bikeman1
Thank you! I will ask about the Estradiol, and check into the E-Initiative. His meds should be arriving today. I was told to get him some good calcium vitamins and vitamin D but that was about all that was recommended. He already takes creatinine and amino acid which he was told both were okay. (but to watch for testosterone in protein shakes that it is sometimes added!!)

I will be back with more questions, I'm sure!
Thank you again!
Mimi