The first month of Nubeqa (darolutimide) monotherapy resulted in a PSA drop from 5.0 to 1.6 . I just had my second month blood draw and PSA is holding at 1.6 . I was hoping PSA would be even lower, but holding steady is good for now. Its likely that I didnt get a better response because for the last 2 weeks I was trying a reduced dose of only 300 mg morning and night, rather than the full 600 mg to see if it would help with the daytime brain fog that was starting to develop. The lower dose did in fact help a lot with the brain fog, but the less than stellar PSA result tells me I need to go back to full 600 mg dosing 2x per day. Hopefully PSA will drop next blood draw after a month of full dosing. On a side note, the low dose Tamoxifen is helping with the man boobs I was developing as a result of the monotherapy ! So far so good.....
Nubeqa monotherapy update: The first... - Advanced Prostate...
Nubeqa monotherapy update
You could possibly try Ritalin to see if it helps with the brain fog. Best of luck to you.
How are your exercise habits? I recall you have heart disease issues, gained fat on ADT etc.
I am still working, so every day at morning and afternoon break I spend 15 minutes making laps around the building. Im afraid that is the extent of my exercise program
Joe I’m NOT saying you ‘should’ be doing more.
I AM saying more would make a major difference re the brain fog.
‘Not enough time’ is the familiar battle cry. In reality there is always more you can do, and always less important things that can be set aside.
You’re ‘still’ working-Trust me I know what that means. However it’s your life that’s at stake. Make it a priority if at all possible.
Thanks..... I keep hearing the "get more exercise" mantra from just about everyone..... I should probably make it a priority. The nurse at my urologists office gave me a pamphlet the other day on an exercise program called "the man plan"
You should ‘probably make it a priority’? Probably? Probably!
Probably what you really need is to make it a priority first and evaluate how much of a priority it should be after a few months.
When you lose fat, gain muscle, see the brain fog clear and all your numbers going in the right direction there won’t be any more probably about it😀
Joe, your brain fog is unlikely to be caused by Nubeqa since it does not cross the blood brain barrier. That is why it is such a great treatment option.
That is what I thought initially too, but after a couple weeks on Nubeqa I started to notice substantial brain fog and fatigue that would start about 30 min to an hour after taking the pills. I can also tell you that it is much more pronounced on the 600 mg dose than it was at 300 mg.
Interesting. Well, it is true that treatments are very individual in the sense that it affects each person differently. Sometimes practicing mind over matter can help. Good luck and kindly keep us informed on how you are doing. At this point, my husband has been on 600 mg for 6 months with promising results and the only side effect that is noticeable is an increase in fatigue. We are managing this with wine and good food.🙂
Yes, good wine and good food can help with almost any situation ! Is your husband also taking Lupron or Firmagon with his 600mg Nubeqa? How is his PSA doing?
He is a Gleason 9 diagnosed 2017. He is on Lupron every 4 months + Nubeqa (he had Docetaxel at beginning). His PSA had started to rise with a doubling time under six months; his PSA dropped significantly after starting Nubeqa and is now undetectable. I am sure your PSA will continue to decline.
Exercise has completely abated all fatigue from the Lupron and darolutamide
How much and what kind of exercise are we talking about ? I try to get in about 30 minutes of brisk walking every day, but Im getting the impression that may be inadequate....
For me very brisk walking for an hour did not impact my fatigue much. I do a HIIT workout one day and the next day a strength workout. My workouts are excessively intense and I am learning this. A certified trainer could help you with a program with light dumbbells that would do the trick. You got this!
Very difficult to asses for brain fog while on darolutamide as you are a study of one. No studies to my knowledge have studied this drug as a mono therapy. Blood brain barrier penetration is minimal and apparently the drug clearance is significant after 8 hours. There is currently a Phase II clinical trial assessing the cognitive function side effects of darolutamide versus enzalutamide dubbed the aracog clinical trial which is also going to asses quality of life issues. I take my darolutamide at 8am and 8 pm with food and have seen no additional cognitive side effects ( I’m also receiving 4 month Lupron injections )
We are on the same time table for taking the Nubeqa. I have also been on Xtandi, and I would say the xtandi brain fog was much worse. Although I was also taking Firmagon with the xtandi, so hard to say which one it really was, or if it was the combination of the two. With the Nubeqa, the fuzziness seems to set in about 30 minutes after taking it, and improves after a few hours around early afternoon. In the evening, I seem to be out by 9:00 after taking the Nubeqa at 8:00ish
How were you able to manage to get a monotherapy treatment with Nubeqa? Is it a Trial or do you have a Doctor that thinks out side the box and you have to pay for it with some help frm Bayer?My casodex therapy may fail this year or the next and Nubeqa Monotherapy I think is my next best choice. I am concerned about ADT which I have avoid for 28 yrs as I have APOE4 gene. ADT could prime me for Alzheimer's which I would like to avoid as much as keep PCa under control. Thanks Pedro Luna
I have a good doctor that understands my concerns about heart complications after all the problems I had with Eligard and Firmagon previously. Insurance will pay for Nubeqa as long as they believe you are taking it with ADT drugs and that you are Non metastatic. If you have bone Mets it might be difficult. I am only metastatic in lymph nodes. And until I had a PSMA scan a few months ago, it was believed they were all in pelvic area, which for some weird reason is considered non metastatic
i've been growing boobs with the monotherapy ADT of bicalutamide, tamsulosin and finasteride (casodex, flomax and proscar) - i'm 74 so the cosmetics are irrelevant. Exercise is minimal, but with almost all pharmaceuticals, muscle and bone loss does occur. Kidney function should also be monitored with all drugs also. I use a supplement for incredible improvement of mental acuity: huperzine A. Not all brands are reliable but this one is: doublewoodsupplements.com/p...
Since the mono therapy leaves the testosterone levels high. PerhapsThis is a situation where adding dutasteride
To block conversion to DHT could provide further benefit as it does with bicalutamide mono therapy. Side effects are not bad. Still can have some libido etc. I used 1.0 mg/day when I was on that regimen. Much better than standard ADT for me. Paul
Side effects from Xtandi monotherapy?
Continue Casodex or move to Lupron?
Enzalutamide/Xtandi monotherapy as ADT with fewer side effects than Lupron
Dad’s latest blood results - PSA down , ALP down , T up 
