psa continues to climb 4.0 in May now 7.5

Don’t you have a doctor working with you to help make decisions about what your treatment should be?

My PSA started rising 2 1/2 years after salvage radiation, Immediately went on Lupron and my PSA went to undetectable. When it failed, I went on Zytiga And it kept my PSA down for 2 1/2 years.

You are now castrate resistant. Median survival is two years, As many above as below. I became castrate resistant six years ago, So you can beat the two years, but they let you get way out of whack as far as PSA is concerned, You have been untreated To a state of almost malpractice.

You should’ve been on an ARSI as soon as your PSA went above around .5. That means zytiga Or one of the lutamides. This is the standard of care set by the NCCN.

The easiest drug that would keep your PSA down is Darolutamide. It doesn’t pass the blood brain barrier and causes very few side effects for most people. I’ve been on at almost 2 years and it’s working really well for me and keeps my PSA undetectable After 15 years and four reoccurrences. You probably would have no problem playing golf with it.

You need to get a PSMA pet test AS SOON AS POSSIBLE.. That will show whether or not you have visible metastasis Which is very likely with your PSA. You could get those zapped with SBRT radiation but you may have so many that it’s not possible.

I can’t understand how you can be going to a doctor and be treated so incompetently. You really need to find yourself a center of excellence and get yourself treatment that matches your aggressive cancer. If you tell us what city/area you live in, we can probably tell you where you can find a really good group of doctors.

You really will not have much time if you don’t get treatment soon. Prostate cancer is very painful and you are setting yourself up for a lot of pain.

This is not something that can wait. You need to be PROACTIVE IMMEDIATELY and get something done to get yourself better treatment.

@jeffmarc

Thanks for the insights Jeff appreciated

Welcome, @jwbaxter32. It sounds like you are currently managing stage 4 prostate cancer. If I'm reading your message correctly, you were recently prescribed by your oncologist to add enzalutamide (Xtandi) to the maintenance therapy of leuprolide (Lupron). However Xtandi was discontinued because it was causing challenging side effects.

Do I have that right so far?

What treatment is your oncologist suggesting as a next step? How are you doing?

@colleenyoung

Current on lupron 90 day injection. Doc added Zometa after bone density scan.

Will start on nubeqa 300 mg tablets one morning and one evening dose 2 tablets

Start this on November 15

Other than perpetual tiredness feel good

@colleenyoung
I have looked into this and Xtandi has not been discontinued. I know somebody was just prescribed it yesterday.

The search of the web confirms it has not been discontinued.

I suspect you’re thinking of a different drug.

@jeffmarc, I was referring to @jwbaxter32's protocol. That his treatment plan included both enzalutamide (Xtandi) along with leuprolide (Lupron). However Xtandi caused challenging side effects for him and was therefore removed from his treatment plan.

@colleenyoung
You are correct, I misread it, thanks for the correction.

@jeffmarc Hi Jeff, do you know if Nubeqa will work if Xtandi already failed? If Nubeqa fails, what are other options for him (other than chemo or Pluvicto)?

@johndavis60
I guess it depends on the reason that Xtandi failed. If it was from the side effects and from the fatigue, Which don’t seem to be clearly , then Nubeqa can really make a big difference.

I know a few people that have stopped taking Xtandi because of the fatigue and other side effects, yet they have no problems with Nubeqa. There are many people over at ancan.org, in the advanced prostate cancer group, that have switched to Nubeqa And are quite pleased with the results. Some of them are even taking as their only drug since it works, even though if you have testosterone. Just today, In a CSC online meeting, someone mentioned Their doctor told him to stop taking Orgovyx And keep on the Nubeqa Because of the severe fatigue side effects they were having. ADT is just too much for some people. I did it for eight months and my PSA stayed undetectable for the whole time.