Journey begins - age 51, PSA 72

It’s too bad all That old info doesn’t get deleted so it won’t cause more worries. LUTAMIDES are the latest drugs used I ve read on the internet. My MO told me their not approved by the FDA yet. FYI only

You have some interesting information. Apalutamide, enzalutamide and Darolutamide have all been approved, though not for the same thing. It seems all can actually be used in almost all cases.

Apalutamide is approved for nMCRpc mCSPC
Enzalutamide has been approved for nmCSPC mCRPC
Darolutamide has been approved for nmCRPC, mCRPC and mCSPC

I suspect some of these have been approved for more than I have listed.

I am mCRPC and have been on Darolutamide for over a year, all paid for by Medicare. It works great, better for me than Zytiga.

@deku
Was your PSA 72 or 7.2?

Just know your feelings are not uncommon and we have all experienced what you are feeling now.

If you follow the conversations you will see the suggestions are to be an advocate for yourself. Do research. Get secondary tests like Decipher, PSMA, bone scans, etc. And as many will say second opinions.

Just know there are some great treatment plans out there. Even in the 1.5 years I have been on MCC I have seen new treatment plans come up and so much more research on even more. Just make sure you are going to an experienced medical facility and doctors. And if at all possible get a second opinion.

Keep an open line to us here on MCC that what MCC is all about. Anything we can help with just ask.

Thanks for the update on these lutamides. Tell me about side effects of Darolutamide compared to Zytiga?

Thanks for your comments, @jc76. My PSA test was 72 (72.0), not 7.2. I do not see an option to update my original post to clarify.

@deku you are anything but alone. I'm newly diagnosed myself and am also relatively young for this at 54, so I cannot offer much advice but what I can say is wait until the biopsy is done. Mine was done on October 1st, results the 2nd, Decipher 8 days ago. My concerns were pretty grounded until 8 days ago. The biopsy isn't fun and I don't wish to repeat it, but you might be in the lucky group of men who don't need to worry about anything yet (or perhaps ever). Even if you have cancer, it's still possible that nothing needs to be done about it.

My first prognosis was active surveillance until the Decipher negated that and pushed me into prostatectomy territory. I was fine with active surveillance and it's not uncommon to just simply monitor this slow growing cancer for years. So even if something is found, you may simply need to get it checked regularly to make sure it's not progressing. Yes that means more unpleasant biopsies but it's better than treatment.

Hang in there! The biopsy sucks and for a couple weeks after it's an adjustment to the after effects but it passes, and just maybe you'll be absolutely fine - even if you do have cancer!

While on Zytiga my blood pressure increased so much I ended up on three different pills twice a day. Before.Zytiga I never had blood pressure problems. Since getting on Darolutamide I’ve been able to reduce the amount of blood pressure medication I’m taking and my blood pressure has gone down a lot. Around 105/65 most days vs 125-130’s and up with Zytiga.

Darolutamide does not get past the blood-brain, as a result, my brain fog has reduced a little bit. Being on Lupron/Orgovyx also causes that fog however.

There was a conflict between Zytiga And Prilosec, Darolutamide does not have that conflict.

According to other people that have been on both drugs, there is much less fatigue with Darolutamide. That’s not one of the problems I’ve had with either drug.

While on Zytiga for 2 1/2 years, my PSA was only undetectable one month, it bounced all over as high as 2.2 but usually below .7. Four months after starting Darolutamide my PSA dropped to undetectable and has stayed that way for 11 months.

I had skipped beats frequently on Zytiga, very infrequent on Darolutamide.

I had 3 afib events on Zytiga.

Very good reply, thanks, my MO says , since Zytiga is working, no need to change it. My BP is normal 120-130. I m on Amiodarone for A fib anyway for my stent in my heart and the A fib I had when I had my seizure in the hospital. April 2022.

Are you on a blood thinner? Last year I had an afib event that lasted for four days. Pulse 175 standing, 150 sitting and 125 laying down. Just what you need to have a stroke. Because I was on blood thinner there were no side effects. Was in the hospital for all four days. My oncologist pulled me off Zytiga immediately.

I am taking Pradaxa which can be reversed if you have to go in for surgery. The only drawback is that I can only take one alcohol drink a day, now I take about one a week, used to have a drink every night and wine or beer with dinner. I miss those margaritas.

I got a blood pressure monitor that syncs to my phone. According to the latest AHA guidelines, your blood pressure should be below 120, and if mine is above that the monitor shows as elevated. If 130 or above it shows as hypertension stage one.

The thing is you want to stay on Zytiga as long as possible, before moving on to the next drug a lutamide, gives you the best chance of a long life

Of course doctors consider a blood pressure in the 130’s to be pretty normal if you’re over 70.