Hi everyone, I’m over in the UK being treated by the NHS… which is great, but with limitations.
I’m on Enzalutamide & Degarelix (radiation to prostate coming soon). DX July 24.
My question is which is the best of the lutamides? New research has come out recently saying Apalutamide confers 23% overall survival benefit… but research is by the maker, Johnson & Johnson. fiercepharma.com/pharma/joh...
Other studies suggest Daralutamide has a better outcome. I have a very small window of time to change medication, after that, I’m stuck with what I’m on.
Any informed opinions as to which is best, and which has most problematic side effects… atm I’m tolerating them ok… it seems to help when I get more exercise. … I also wonder if changing horses mid-river could be a mistake, even if another looks like it’ll go the extra distance. Thanks.
(My info - low volume mHSPCa, spread to lymph nodes. Starting psa 530, down to 0.03 as of yesterday.. PSA dropped from 530 to 1.3 after 4 weeks of degarelix only.)
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Broccoli24
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The "research" you link is another useless retrospective database study. The problem is selection bias - why were patients who got drug A given that drug and not drug B?
Thank you! Do you think any of the lutamides outperform the others? In terms of longevity or side effects? I slightly worry about changing horses mid-stream. One thing I saw encouraging me to stay on Enzalutamide was an early study saying enz in combination with masofaniten could be effective when HS turns to CR (I know that research is years off yet… but hoping I can squeeze a few years out.0
Enzalutamide without a prescription - onlinecheappills.com/enzalu... Enzalutamide immediately halted the doubling of my PSA level and has, in 3+ months, reduced the PSA from approximately 400 to 5.7! I am feeling MUCH better and functioning MUCH more normally.
Hi. UK here as well. I've been on Enzalutamide for over 4 years and hopefully longer, so I am really happy with my response to Enzalutamide. Starting PSA of 1311, widespread to bones and lymph nodes.
I wasn't given a choice to be honest. If I had a choice, Darolutamide is the newest and the trials with Docetaxel chemotherapy do show the longest survival.
The side effects, it's hard to tell what are from Enzalutamide and what are from my quarterly Lupron injections. Basically muscle loss, weight gain around the middle and breast areas and fatigue are the side effects I get.
Thanks… yes, I might have opted for Darolutamide and Docetaxol earlier too, had a known… and I think Darolutamide isn’t available to us without chemo on the NHS. Great to hear you’re having such a great and durable response… that gives me hope! I’m finding the more exercise I do the fewer side effects I have. The main ones are hot flushes (mild) and musculoskeletal-skeletal twinges (mild)… but the latter maybe from increased gym usage. Not used to doing weights… and trying to get into it.
With the caveat that each of us respond differently when it comes to side effects, my experience in switching from Enzalutamide to Darolutamide, due to the extreme fatigue, brain fog and other side effects I experienced with Enzalutamide, is that my energy level, ability to think more clearly and general feeling of well being improved markedly with Darolutamide. Even frequent hot flashes, attributed largely to the Lupron I was treated with as well, lessened in number and intensity.
Thank you, unfortunately I think Darolutamide isn’t an option for me in the UK on the NHS as it has to be administered with docetaxol. I’ve seen various bits of evidence pointing in different directions, but nothing conclusive enough to make a switch from Enzalutamide - which isn’t giving me terrible side effects so far… and I seem to be having a good response to.
My husband was on monotherapy enzalutamide for a year with no issues. Suddenly started getting dizzy spells and kept increasing. Apparently enzalutamide builds up in the system over time. He just switched to darolutamide and dizziness is already fading. He also has low volume PCa to retroperitoneal lymph nodes and gleason 9.
I was on Nubea & Lupron for over three years and PSA was less than 0.02 for three years. Now on my thent month of vacation. PSA 0.24While on Nuveqa no issues.
I am 74. I had a Prostate Ca with a Gleason 9 with PSA of 12 and PSMA negative preop.
I had a Radical Prostatectomy with pelvic lymph node dissection in September of 2023 and the pathology show free margins but some cancer cell in the periprostatic fat.
Immediately Post RP my PSA went to less than 0.01, but in 5 months started to rise.
At 7 months (May 1, 2024) it was 0.2 with an MRI and PSMA negative (as expected) and I was advised to start on ADT (Leuprolide) and Radiation to prostatic bed and pelvic nodes.
My Oncologist decided to add Nubeqa to the Leuprolide ( for 24 months), and because of Urinary incontinence I decided to delay the radiation by 6 months, which I will start in a week.
Within 6 weeks of being on the 2 meds, my PSA went down to 0.01 and in 3 months is 0.02 which probably is not different than 0.01 and will have another PSA 6 in 10 days.
I hope that the radiation will offer me a chance of cure. I still need to be on the meds for 2 years even though I will try to negotiate a holiday if my PSA remains pretty low.
Regarding side effects, hot flashes is a problem, constipation, some minimal anemia and tiredness, which I try to compensate by lifting weights and walk.
I don't have experience for comparison, but I've been happy with Darolutamide and side effects have been okay. I have stiff joints but this seems to come with ADT treatment in general (read somewhere that healthy, lubed joints need some estrogen). My oncologist very recently dropped my Daro dose from 2 tabs twice daily to 1 tab twice daily to see if it would help, but no change there yet.
Thanks - unfortunately, the NHS won’t put me on Daralutomide as I haven’t had chemotherapy. I was given doublet treatment because I’m low volume, Gleason 7.
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