Orgovyx+Erleada (Apulatamide)

@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.

@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

@jeffmarc
Thanks so much for all this insight! There is so much to learn and keep track of...I'm really concerned about the Abiraterone as my husband already has Afib and has had one ablation already. I'm sure his oncologist knows about that....but I will double check.
He has been going up and down w/ bouts of depression but trying to stay positive. We have had so many setbacks with sepsis etc that the actual full diagnosis is taking more than I would think it should. Even my daughter who is a heme nurse said it seems to be a very chaotic start to treatment and if anything could go wrong it really has:( With that in mind, we pray it can only improve from here! Thank you and like I told @bikeman1, I'm sure I will be back with many more questions as we begin this journey! Thank you so much for your time! Mimi

@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

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 they have just put me on the same combination. I have a reoccurrence at mine is locally advanced, but it’s contained around the prostate and the local lymph nodes.

I was just wondering at what stage is yours at so I can get an idea of how long it could keep it suppressed thank you

@mimimaria
Feel free to ask as many questions as you like--that's what we are here for.
I realize I should have elaborated on "my life is pretty much back to normal." When I started the drugs (all three a few days apart) in June, I had about a month of not feeling great (weird head pressure, serious fatigue after bike riding, and needing long naps). Two of those days I went straight to bed for hours, although on the others when I pushed myself to bike, I felt much better very quickly. I believe (as Mrs. Surf suggested) that those bad side effects (SE) were a result of my body going from T levels of 350 to <3 during that month--huge changes in hormone levels that not surprisingly had bad SE.
After that first month the SE stopped very quickly and since then "my life is pretty much back to normal."
Note also there are SE from long term use of both Arb. and Prednisone. But in the short term after my body acclimated to the big changes (at least for me), being on P was amazing. I had lots of energy, felt great, and all my pre-existing aches and pains disappeared. Alas, that party is over and the aches and pains are back!