Hormone therapy with the lutamides and keepin your testosterone intact

[rococo]

We have plenty of them now. Flutamide, nylutamide, bicalutamidee, ensulutamide, ampulutamide, darolutamide. Are there any more? There are also adjuncts to these. I use avodart, some in clinical trials. I failed casodex after 7+ yrs than xtandi for a year with lupron which I think wasn't necessary since the extandi was working well towarda the end of the lupron cycle. Now after a 5 mo holiday psa probably to above 5. Will know this friday and decide what next. Continue with the xtandi or save it and try nylutamide which worked foe some after casodex failed. Not crazy about the side effects of xtandi. Wish this option were more common to get some feedback before I make a decision this friday. Thanks and best to all. Rocco

[mklc]

Good morning Rocco and Merry Christmas to you and your family.

Are all these drugs that you mention similar to Cassodex?

So do you take them with Lupron?

Flutamide, nylutamide, bicalutamidee, ensulutamide, ampulutamide, darolutamide.

Seasons' Greetings and warm wishes.

Lynn

[rococo in reply to mklc]

Without lupron. It's called antiandrogen monotherapy. These are all antiandrogens. When I was on casodex monotherapy, had a high T of 1000 which was blocked by casodex locking on to the pc androgen receptors. Rococo

[cesanon]

Have you considered bipolar testosterone therapy?

[Tall_Allen]

Are you talking about an anti-androgen in addition to Lupron or instead of Lupron?

[rococo in reply to Tall_Allen]

. .Read above Tall Allen. At first I monitor these drugs monthly till psa is low enough to ease up. Thanks for your interest. Rocco

[Sxrxrnr1 in reply to rococo]

Darolutamide of course not quite FDA approved hence no Medicare part D help. I have been following progress for a couple of years as am currently on Xtandi monotherapy which SE of fatigue is overwhelming at times. 13 years of zero treatment of G9 until October of 2017 when PSA had suddenly jumped from 70 to 374. Time to pull the trigger,,,had some Mets too that suddenly showed on Pet 18 Fdg. Started Xtandi, psa went to 12,in a few weeks then signed on to 6 sessions of Taxotere and dropped to 3. Scans cleared up.

Interested in Daro as claimed no blood brain and lessened central nervous system assault as with Xtandi.

Have I got this right? My Mo’s,,,I have 2 are well known thruout USA as among the best. I like you prefer to be my own drummer and have continually fought the good fight against ADT and all local intrusive therapies.

As expected all so many years ago things have taken a turn that I had wagered May not but now has.

My question comes down to this. Any information that anyone can share on Darolutimide,,,likely FDA approval, when might be, cost, trial outcomes or own experience with it. Particularly with fatigue SE’s, if improved over Xtandi.

The 13,000 dollar annual cost plus the fatigue of Xtandi is beginning to cause me to reconsider ADT as the lesser of evils. I am 78 years of age, no other co-morbidities of likely fatal consequence of which I am aware. I prefer to keep it that way,,,,hence no ADT has ever been contemplated among other well known reasons.

Thank you for your thoughts and opinions.

[j-o-h-n in reply to Sxrxrnr1]

Would you please share the names of your 2 well known Mo's. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/26/2018 6:24 PM EST

[Tall_Allen in reply to rococo]

So it's "instead of." You are mistaken in your belief that "using up" a therapy is a valid consideration - therapies increase survival more when used earlier. GnRH agonists have better oncological outcomes than older anti-androgens (like Casodex or nilutamide). It is so far unknown if the second generation antiandrogens (like Xtandi or Erleada) are equally effective as monotherapies.

[rococo in reply to Tall_Allen]

I get your point, the best is better earliar. I TRIED THAT EARLY on using combined adt as an adjunct to primary rt. and psa reccurrence followed. It was than I decided to play cautious general, retain my arsenal and try to keep some reserves for the possible big battle.

[Christopherg in reply to Tall_Allen]

Seasons' Greetings Tall Allen,

Should I therefore stop my Lupron and Cassodex and change to Zytiga?

Best regs,

Chris

[Tall_Allen in reply to Christopherg]

PSA has to be rising and above 0.2 before Zytiga is approved. I think you will have less anxiety if you switch io a conventional PSA test, rather than an ultrasensitive one.

[Christopherg in reply to Tall_Allen]

Good to know. Thank you.

Happy New Year and all best wishes.

[rococo]

Not really. I usually have plan A B. and C. My mo is quiet accommodating for a non compliant like me who called his own shots for 19 yrs. I had no problems adt side effects, only its negattive effects on overall survival. Come on metabolic syndrone cardio events, osteo,q anemia etc etc. Can't sit around with this stuff and I never did so I'll use up all of the lutamides[ antiandrogens] before plan B lupron, zolodex, firmigon . If my cancer turns agressive I'll start combining best to all and happy holidays. Rocco

[rococo]

Your right about xtandi, side effects more troubling than adt which I took intermittingly a few yrs in my phlight. Great results with the chemo added instead of adt which is more prolonged. Hope its durable for you. If not , last choice adt may resitize to chemo as the reverse does. And there is still xofigo. Good luck with the good fight. Rocco

[WXYZ123 in reply to rococo]

Johns PSA dropped from 450 to 40 first go round with Casodex...then it started to climb. Talked into Lupron, nothing good came from that. Tried casodex again with no effect this time. Now on Zytiga 250mg with low fat breakfast (university of Chicago study) will have a PSA this week to see how it’s going...interested in who your docs are...need someone very knowledgeable but also willing to deviate from SOC. Thanks

[Sxrxrnr1 in reply to WXYZ123]

I might suggest Dr’s Dorff, Scholz, Turner, Snuffy Meyers,,,now retired, Leibovitz,,,all with excellent reputations with willingness to bend SOC rules. All located Southern Calyfornua.

[WXYZ123 in reply to rococo]

BTW last PSA 1127

[podsart]

What is the status of daralutimide? Isn’t it supposed to be done with phase 3 trials now and is the FDA going to fast track it — so Medicare etc will cover it?

[j-o-h-n]

Quoting WYYZ123: "interested in who your docs are" Me Too.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/26/2018 6:28 PM EST

[Sxrxrnr1 in reply to j-o-h-n]

As I was able to be prescribed Xtandi with some struggling without enduring all of prerequisite failures of all SOC therapies,,,RP, RT, ADT, Chemo, etc. and having it covered somewhat by Medicare part D, I am reluctant to give names without permission. However will state that one is located in Southern Calyfornua practicing at a world renown Prostate facility in an LA suburb, another in a preeminent nationally renown SF top teaching hospital, and a 3rd excellent MO for local support to my home in Mtn View, Ca. Hope this helps.

[j-o-h-n in reply to Sxrxrnr1]

Well thank you for your response... My excellent MO is Dr. Michael Morris of MSKcc in New York City (I don't have his permission but he wants, he can sue me).

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/26/2018 9:22 PM EST