Stage 4 Metastatic - what to expect after 6 months?

@xahnegrey40
What radiation does is kill the tumors, but they die the next time they try to divide, to create more. It does not immediately shrink the tumors it does shrink them over time.

The ARPI makes the tumor shrinkage significantly faster and more profound. This article discusses it.
https://www.urologytimes.com/view/interpreting-real-world-evidence-in-arpi-treatment-decisions-with-martin-schoen-md-phd

@jeffmarc How ARPIs Work (Systemic Treatment)Starve the cancer: Most prostate cancer cells need male hormones (androgens like testosterone) to grow and survive.Block the signal: ARPIs act as blockers or stop hormone production throughout the entire body.Travel everywhere: Because you take them as pills, they travel through your bloodstream to reach cancer cells anywhere in your body (systemic treatment).Cause cell death: Without the hormone fuel, the cancer cells stop dividing and often die off. [1] (https://www.hopkinsmedicine.org/health/conditions-and-diseases/prostate-cancer/hormone-therapy-for-prostate-cancer), [2] (https://www.youtube.com/watch), [3] (https://www.urologytimes.com/view/mechanisms-of-action-and-differentiation-among-arpi-therapies-in-mcspc)How Radiation Works (Local Treatment)Physical destruction: Radiation uses high-energy rays or beams (like X-rays or protons) to physically break the DNA inside cells. [1] (https://www.mayo.edu/research/clinical-trials/cls-20470489), [2] (https://www.youtube.com/shorts/f5xTMBxVkt0)Target a specific spot: Doctors aim the radiation beam directly at the prostate gland or a specific tumor site. It does not travel through the whole bloodstream. [1] (https://www.youtube.com/watch)Kill on contact: The energy damages the cells so badly they can no longer repair themselves or multiply, causing the targeted tumor to shrink. [1] (https://www.mayo.edu/research/clinical-trials/cls-20470489)

much more articulate than I could describe and prob will help many of us here who may not quite understand the protocol ..learn something new everyday, like it or not !

@jeffmarc I am under the care of Dr. Kwon. He referred me to Dr . Hujec at Minnesota Oncology for chemotherapy. My SBRT radiation was with Mayo. I continue to be monitored by Dr. Kwon with periodic PET scans. Dr. Kwon’s team is the absolute best!

My experience is quite similar to yours. I was diagnosed stage 4 last October. Started orgovyx and nubeqa right away. Went through chemo all winter, ending in March. PET in May showed no change in my tumors. Not better, not worse. The Dr's were very pleased with that result.
I continue with the orgovyx and nubeqa. Dr says indefinitely. So it seems to me that they are satisfied with arresting the progression of the PC. At least for now.
Yes, I have many side effects. Fatigue, foggy brain, hot flashes, neuropathy and more. I consider this the "new normal" for me.
This forum has saved me no end of difficulty. While my Dr is considered at the top in his field he is not so good at explaining things. I have learned so much here and it has saved me from so much confusion and worry.
I wish you the best and would like to hear how you are now.
For me I started a seasonal part time job last May. 3 six hour shifts per week. I work in the pro shop of a golf course. Due to weather the course will close the 1st week in November.

The side effects you are getting are from Orgovyx not Nubeqa. I’m not sure you’ve done it, but you should get a DEXA scan as soon as possible. ADT deteriorates 7your bones a lot and you need to find out where you are before It starts to deteriorate your bones much, that scan can show you how strong your bones are Before the damage is done.

Here’s some more information

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.

@sww50 My experience is quite similar to yours too. I 75 and started orgovyx and nubeqa last May. I actually feel pretty good and my PSA is now .06, down from 4.67. I’ve have no radiation but considering to have a second opinion. My current clinic is UCHealth Cancer center which is highly rated. But Mayo, might be worth a visit. I stay very active playing golf walking 18 holes 4 times a week here in Colorado. I believe that gives me plenty of exercise. Thank you for sharing.