Hormone Therapy

5 years? Wow. I've been on Orgovyx 2 1/2 yrs. My doctors want me to come off it.

I've had surgery, radiation, and ADT. PSA < 0.01 for over 2 years. I was Gleason 9, Decipher .99 so aggressive.

I've got a small lung nodule < 6mm and stable. Probably not cancer but I'm afraid if I stop the Orgovyx it might start to increase.

I've experienced muscle weakness, joint pain, and overall tiredness-- don't know if this is due to the Orgovyx or not. I'm scared to stop taking it.

Orgovyx will cause muscle weakness and a few other things. I have been on ADT for eight years, I can assure you that you can survive and do well even though you are on ADT.

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 know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Can’t hurt to try it.

I now use an embrlabs.com wave 2 device to control night flashes/sweats and reduce day and night time hot flashes.

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.

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.

My Gleason score is 4+3, grade group 3. I understand that ADT plays an important role in controlling cancer growth and helps the radiation do its job. I’ve just been reading that some oncologist will proscribe intermittent ADT therapy and closely monitor PSA. My RC said that some men do really well on ADT. Do I want to die early from this disease? Of course not. But what am fearful of is quality of life.

As always, I appreciate all of the input from you guys. These are tough decisions.
I’m glad to hear that you’re feeling ok after the 5 day radiation treatment. Was headed for the 6 weeks treatment plan until I asked for a second opinion at UCLA. This is not yet standard of care but it seems to be headed that way.

A Gleason, 4+3 does not call for two years of ADT. But after a relapse and salvage radiation, this is the following information that the NCCN provides.

Key points from NCCN and recent evidence:

24 months of ADT with salvage radiation improves outcomes for men with adverse features (including Gleason 4+3).

Shorter durations (e.g., 6 months) have not shown the same survival benefit as 24 months in this context.

The decision may be individualized based on other risk factors, side effect tolerance, and patient preference, but 24 months is the standard for higher-risk cases per NCCN.

I am getting ready to start ADT with Orgovyx and have been reading all about the possible side effects. I am with you and wondering what your quality of life is on ADT. I have not read anything that directly address what your quality of life is. Are you house bound, having to ware pads to prevent soiling yourself or what ever else you can think of. I would really like someone that has experienced this to directly address how much your life has changed and do you still consider that you have a quality of life.

I've been on Orgovyx 2 1/2 yrs. My doctors want me to come off it.

I've had surgery, salvage pelvic radiation, and ADT (Orgovyx). PSA < 0.01 for over 2 years (since radiation + starting ADT). I was stage 4a, Gleason 9, Decipher .99 so aggressive. I've got a small lung nodule < 6mm and stable. Probably not cancer but I'm afraid if I stop the Orgovyx and it is cancer that it might start to increase.

I've experienced muscle weakness, joint pain, trouble sleeping, and no energy, overall tiredness-- don't know if this is due to the Orgovyx or not.

I'm scared to stop taking it. I don't mind the ADT side effects although it's been getting worse. I suppose my doctors are worried about possibly more serious SE's like bone loss/weakness and heart problems. But all this sounds better than my cancer getting worse.

Drs apparently just think I've been on it long enough and I suppose I'll become CR eventually? Don't want that. But, it's scary to stop, not knowing what might happen.

I’ve been on ADT for 8 years. Yes, the hot flashes are annoying and the brain fog as well, but I’m able to live a pretty normal life.
To offset the fatigue, the muscle deterioration and the bone deterioration I walk about a mile twice a day, Morning and Afternoon. I also go to the gym three days a week and exercise with weights. Sort of essential to keep your muscle tone And bones from deteriorated.

A lot of people end up staying on ADT for life because the type of prostate cancer they have requires it, But I am still alive 15 years later even though I have to stay on it.

You would never know I was on ADT if you saw how I lived. It doesn’t limit me in any way.

What ADT treatments are you on?

Have been on Orgovyx for 3 months which has been keeping my testosterone below 10 and psa was at .37 on 6/23, down from 31 before starting Orgovyx. I am T1cN1M0, Gleason 8, am relatively low volume, but have some high risk cell patterns. I have 2 pelvic nodes positive, second one was barely visible, am still considered localized. Will start 28 visits of radiation this week. I may need to also go on a second medicine in the form of Yonsa (micronized abiraterone) or Xtandi or Nubeqa. I had a bad reaction to abiraterone. If I don’t tolerate Yonsa am not sure about adding a receptor blocker this early in the process.

Thank you,

Phil

Hi, I have stage 4 and with minimal side effects with orgovox, works for me. Not all can say that. Unfortunately, not all drugs fit all Indvidual's. Have to weigh which drug is most effective to treat your cancer. All drugs have side effects and how much are you willing to tolerate. Good luck.