How's It Going With Darolutamide?

[yeatz]

I've been taking it for three weeks; no results yet, no side effects.

I notice that on Posts from a year ago, two people were taking it,

or were about to. They were Danielgreer (had been taking

it for two months then) and wat380bjw (about to start). If you're

still there, can you describe your experience with it? If anybody

else has taken it a while, be interested to hear yours, too.

Interesting note: The test that got daro approved by fda

didn't count a spread to the lymph nodes as a metastasis,

as most oncologists would.

No, a node involvement had to go beyond pelvis and abdomen

("distant" as opposed to "local" or "regional"), specifically

beyond the atrial bifurcation, to qualify as metastatic.

Only bone mets and "distant" nodes counted.

So when Beyer says it's only for MOCRPC,

they're fudging a little. If your metastasis is only in

lymph nodes, don't hesitate to ask for this drug.

Reports from Johns Hopkins & other respected outfits

praise it highly.

My own PCa has spread to lymph nodes beyond the

bifurcation mark. So it qualifies as metastasis.

(No bone mets, though.) That meant my MO had

to get permission for off-label use.

Federal law still requires Medicare to pay for off-label

cancer drugs, as long as doc proves it's got decent

chance of working. That wasn't hard in this case.

Anyhow, if you're out there, Danielgreer and wat380bjw,

how's it going? (Well, I fervently hope!)

yeatz

O

[Danielgreer]

Hi Yeatz, I’m still taking Darolutamide now. When I started taking it, my cancer was already metastatic to my bones but my MO was able to get it approved somehow. I think it was much better than the other options since it doesn’t break the blood brain barrier and the cognitive issues are much less. I became resistant about 10 months ago but my MO has kept me on Daro because she believes it is synergistic with the Xofigo I’m on. I don’t have side effects from it except for a little fatigue. I think it’s been a good drug for me but I’m probably getting close to the end of using it.

[wat380bjw]

I have been on Daro for a little over a year. I was switched from Xtandi because of SE issues. Daro has been much better in that department, The Se for me seem to be mostly just some fatigue. My PSA has been rising slowly....from a nadir of 0.24 to now about 0.37. Not sure what we are going to do next or when. Hope this is helpful to you. Best wishes Brad

[John438]

Hi, I’ve been talking Darolutamide 600 mg in the morning and 600 mg at night for about 3 months now. In the first 6 weeks my PSA dropped from 18.06 to 1.24 . I have had one major side effect which is extreme fatigue. On Friday my oncologist said I could take 1 pill in the morning and 2 pills at night. It’s a little too early to tell but I think I’m feeling a little better. Tomorrow I go in for more blood work and hopefully things will still be looking good.

Keep you posted later.