Alternative to xtandi without the sign effects

[Hotcars74]

The support group that I attend, had a speaker from the University of Michigan ( Mark Moyad MD ) he had mentioned two alternative ADT drugs that have the same characteristics as Xtandi, but without the sign effects, I did not catch the names, and would appreciate if anyone knows, and if so, can maybe tell me more about the two drugs, so I will know more when I see my MO at the end of the month, My MO wants to put me on Xtandi soon, but I'm concerned about Seizures, as my late Mother had Epilepsy most of her life. I have so much respect for all on this site, thank you

[LearnAll]

One of the drugs might be abiraterone (Zytiga) other might be Bicalutamide (casodex)

Xtendi has seizure risk ,,if you have family h/o seizures..better avoid it.

[tango65]

Darolutamide does not cross the blood brain barrier and it is not associated with seizures.

[Hidden in reply to tango65]

That's right. I just asked my doctor if he had anyone on it and he said he didn't. I guess it's even more expensive than Xtandi (hard to imagine) but it's probably better. I've also read that it works despite all known AR variants. The trade name for the drug is Nubeqa.

[Tall_Allen]

The drugs are (1) Erleada- approved for non-metastatic CRPC and metastatic hormone-sensitive PC and (2) Nubeqa - approved for non-metastatic CRPC only.

[tango65]

I agree, apalutamide have similar side effects to enzalutamide and it may be associated with seizures.

[Hotcars74]

Thank you guys, I may have to stick with Xtandi, if the other drugs are much more $$ I'll find out more from MO odds on the seizures ?

[EdBar in reply to Hotcars74]

Xtandi has a patient assistance program (check the website or call them) that might help with any cost not picked up by your insurance.

Ed

[Grumpyswife]

My husband has had much better tolerance with Zytiga with prednisone. He is able to take full dose without side effects. With Xtandi he could only barely tolerate half dose.

[bjevans1258 in reply to Grumpyswife]

Hi mjbach - what side effects did your husband have? Mine tolerated the half dose (2 pills) but they upped him to the full dose (4) pills because his PSA count was rising. While his PSA count is remaining kinda steady at 28, which is high, he is in extreme pain and has trouble walking. All they are doing until he sees his MO in 4 weeks is prescribing a higher dose of pain meds. He is now on the patch (not sure what it is), the 30 mg of extended release every 12 hours weren't helping at all. And that included him taking a 5-10 mg for break through pain.

[j-o-h-n in reply to bjevans1258]

Hello bjevans1258, Would you please update us with your husband's data. Age? guessing 62 next month. Location? Scores, psa and gleason? Treatments to date? Treatment Center(s)?, Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/15/2019 6:48 PM EST

[bjevans1258 in reply to j-o-h-n]

Hi J-o-h-n! Husband is now 70, diagnosed July of 2016, Gleason 4-5, PSA was about 130? Mets to the bones (spine/hips/vertabrae/rib/cheek bone and back of head, lit up like a Christmas Tree) Ended up in the hospital in Tampa (on vacation), his kidneys were shutting down. Had to have stents inserted into his urethra. Stents were successfully removed a couple of weeks later. Urologist started him on Lupron. Met with the MO shortly thereafter, had 6 treatments of Docetaxel. PSA count down to .5 or so. Lupron started failing after 2 years, started on Zytiga w/ Prednisone. That failed after about 4 months so now on Xtandi. He had a 3 week break from Xtandi due to headaches, then back on at 1/2 the dose. MO upped Xtandi to full dose several months ago....extreme pain...is it bone pain or is the Xtandi toxic for him again.?

[j-o-h-n in reply to bjevans1258]

Thank you for your quick and detailed reply. You may want to copy and paste it in/on your home page under your user ID for other member to be able to view.

As far as your question regarding his extreme pain, I'm sorry but I am not qualified to answer it. (I wish I could) Sorry and Regards...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/15/2019 8:20 PM EST

[bjevans1258 in reply to j-o-h-n]

Will do, and thanks. Hard thing for all of you to go thru.

[wat380bjw]

I believe the two are darolutmide and a not yet FDA approved Proxalutimide. Perhaps others have experience or more knowledge of these. My DR is suggesting darolutimide for me starting in January. Let us know what you find out.

[podsart in reply to wat380bjw]

What Insurance do you have - will it cover daralutimide?

[wat380bjw in reply to podsart]

My DR wants to wait till 1/1/20 to do a benefit analysis. But they do have a zero copay program if you have private insurance call dude. I am hopeful.

[podsart in reply to wat380bjw]

Good luck

[joeguy]

I was on Xtandi for about 10 months, but had to stop because of heart side effects (not seizure). I started having all sorts of strange heart events shortly after starting ADT drugs 3 years ago, that only got worse on Xtandi. I now have Ischemic heart disease, and Im looking for a treatment without heart risks.....

[Kevinski65]

Where is that trial? I'm doing well on xtandi but the side effects are a lot to handle.

[Shooter1 in reply to Kevinski65]

Side effects made me an invalid at 160 mg. Lowered dosage several times and it kept working. Now living on 80 mg and PSA of 0.120.

[Kevinski65 in reply to Shooter1]

How long on xtandi?

[Shooter1 in reply to Kevinski65]

One year so far.

[Parscore]

So do you know the name of the drug that is in phase 3 trial?

[VictoryPC]

Just don't do the Lupron.

[j-o-h-n]

See you get HOT Answers here....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/15/2019 6:50 PM EST

[Barbara345]

I believe they are Apalutamide (Erleada) and Darolutamide, from what I learned helping my husband look at his options. He is currently on six rounds of Docetaxel, and also on Lupron which is supposed to continue indefinitely (possibly changing if the cancer becomes resistant). He had bicalutamide (Casodex) at the beginning of his treatment to avoid testosterone flairs, but only for a month. I hope this helps.

[Kevinski65]

If you're referring to prostvac, it is a fowl pox vaccine. I believe there was a woman with breast cancer who contracted measles and it stimulated her immune system to throw off an advanced cancer. This intrigued scientists to try something like this. It proved useless with xtandi but we'll see it matched up with other cancer strategies in the future.

[Kevinski65]

I know I couldn't afford darolutamide .

[Kevinski65]

Too bad, if it works