Lutamides

[Twoofus]

I have reached the point after radiation therapy and Lupron therapy over the past 4 years where PSA has started its inevitable increase.

The increase is small, but it has tripled in last 3 months. Waiting on results from blood draw on Tuesday. Status is nmCRPC.

I’m considering changing my current provider team to a new group. My current MO has recommended I start enzalutamide (Xtandi).

My pending MO prefers darolutamide.

Has anyone studied the literature to determine if there is any comparative information on these drugs, as well as apalutamide.

Also I’m interested in experience with any of the drugs. Xtandi seems to be the first of these three with darolutamide the most recent ( this summer). I’m glad these drugs are available and I’m interested in obtaining the comparative data and experiences.

Information on costs is also welcome. They are terribly expensive, and costs may be keeping many of us from going with this approach.

Thank you for sharing your knowledge on this topic. It appears all three will be approved for both metastatic and Nonmetastatic prostate cancer. Will be a big issue for many of us warriors. Best wishes to all.

[tallguy2]

I have not read a lot about darolutamide, but am aware of the announcement last summer. My MO and Uro agree that abiraterone plus potentially a research drug are right for me. Xtandi has not been mentioned, perhaps because they are aware that my father had a seizure while in Xtandi.

[Tall_Allen]

There have been no comparative studies. We have the most experience with Xtandi, of course. Darolutamide does not link to GABAA receptors and does not penetrate the blood brain barrier, so fatigue and brain fog may be less of an issue.

[GP24]

I would just begin with Abiraterone which is available as a generic drug now. This study recommends Abiraterone before Xtandi:

thelancet.com/journals/lano...

You could choose the sequence Abiraterone followed by Darolutamide as well.

[AllenMarco]

I started darolutamide last week. No major side effects so far. Will continue to share and monitor other men’s responses.

[Twoofus in reply to AllenMarco]

Thanks for your response. I’m very interested in your progress as you continue with this new medicine. I wish you the best.

Retail prices for darolutamide are through the roof. If you don’t mind sharing this information, I sure would like to see some numbers. Especially true if you are using Medicare part D.

I look forward to monitoring your successes and issues with Darolutamide.

[AllenMarco in reply to Twoofus]

I’m getting the first 2 months free from Bayer, and then Medicare quoted a copay of $2500/month. Will apply for assistance or Foundation help if the initial Rx is working.

[Twoofus in reply to AllenMarco]

Thank you for information on your real life experience. You are starting from a great position when compared to retail. You and Qyour doctor(s) did a good job on such a new medicine. Best wishes on working on assistance from sources out there. Shortly I will be doing the same.

And most of all I hope the treatment meets all your expectations.

Doug

[Twoofus in reply to Twoofus]

I just went to your profile page and read the extended cost discussion on this drug. Should have done this earlier. I believe two things on this: you are on the most promising of the 3 drugs, and this group will find ways to beat your current costs.

Doug

[AllenMarco in reply to Twoofus]

Had my first PSA recheck after starting darolutamide. 3 weeks out down to 2.78 from 10.84. Fingers crossed. No noticeable side effects yet.

[Twoofus in reply to AllenMarco]

Great news. This is not definitive or even yet a trend line, but a strong start. Effectiveness and good side effect profile are what we hope for. Hoping many of us can benefit for a solid period of time from this and other new treatments.

Thank you for sharing.

[rscic]

Consider foreign/online purchases of medication .... costs are FAR lower in most cases.

[Hidden]

I took apalutimide for 18 months. Was taken off a month ago because of crazy side effects (for me they got worse over time). Great drug! Knocked my pc into remission pretty fast. My mo tells me I get a 3 month drug holiday and then go onto darolutimide. He says the side effects a few by comparison. We’ll see.

[Twoofus in reply to Hidden]

Read your profile. You fall down (literally) and get up for more. You are a brave man. I’ve added you to my limited hero listing.

[Hidden in reply to Twoofus]

Lol, not a hero...just another brother doing my best to support the brotherhood :). We’re all in this together!

[Twoofus]

I’m back again. At the risk of being obsessive about the cost of darolutamide, I want to bring up an issue on our real cost of taking this drug.

I have the AARP Medicare Rx Preferred Part D Plan. My monthly premium in 2020 will be $84.60. I have concluded the cancer fight along with cardiac issues and god knows what else may come along for a 70 year old man, that a top of the line Part D Plan is a good buy.

I went to the UnitedHealthcare website and entered darolutamide and a few other of my drugs into their calculator. Darolutamide is listed as a tier 5 covered drug. My annual cost for this drug calculates at about $10,000 for next year. This considerably less than the Bayer charge and also less than their DUDE program.

What am I missing? Is the drug not covered by Medicare? Is the United Healthcare calculator simply wrong? I intend to go on darolutamide early next year, and I don’t want huge financial surprises to screw up my life on top of this horrible illness. What do you say?

Doug

[AllenMarco]

I’m in the early stages of using darolutamide and getting the first 2 months free. I’m sorting out the rest of it, like you. As I learn more will post.