Beloved, well-read, much-experienced cancer colleagues,
My PSA has gone up quite slowly since being OFF all ADT since 2015-16 clinical trial on Lupron and Apaludimide (I had heart attack and a TIA then- my oncologist has not urged me to go back on ADT since). My PSA is now just under 2.7 but was 1.4 in July, 2020, so the doubling time has been slow. However, my first PSMA scan in January showed 9-10 tiny nodal mets from abdomen up to my neck.
I see my oncologist in a few days, and if Medicare will cover it, I am thinking I’ll be going on degarelix (Firmagon) supplemented by darolutamide (Nubeqa), both chosen because of past cardiac concerns (presumably heart and brain-safer than Lupron and Apalutamide).
Do you guys think this is a good plan? And if I start, should I plan to just stay with it? It’s not as aggressive as the triple plans some recommend, but my doubling time is slow and am only now seeing mets, all of which are in lymph nodes…
Thanks
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SeattleDan
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Don’t know yet- hope so. Nubeqa’s supposedly better in not crossing the blood-brain barrier. But maybe my situation doesn’t yet necessarily call for it in the first place, given the slow doubling time.. ??
It is only approved for non-metastatic CRPC. You qualify as non-metastatic, but not as CRPC. But I've seen some oncologists get it for their HSPC patients - I didn't want to know how.
With the past heart attack while on ADT I would be cautious also... I have been on Avadart only which blocks the bodies ability to convert testosterone into DHT and does not block the bodies ability to make and use testosterone -- DHT is what drives PCa and Avadart has shown to increase PSA doubling time by 66% that would extend your already long doubling time to 4 or 5 years or more.... trials have shown that 50% of the people put on Avadart with BCR --- are progression free 10 yeas later. I have been on nothing but Avadart for 6 + years and counting with PSADT of 2 plus years -- current PSA 1.7 .... my PSA was 0.8 when I started Avadart in late 2016.
you may have seen the links below -- they all relate to yours and my condition.
All good info it the T level is undetectable then isn't Avadart useless? I am on monthly Lupron and Nubeqa. Nubeqa since May last year. I am growing new hair in front and the thin area in the typical thinning bald spot area is getting new hair also. My T level is undetectable as is my psa. Oh, no mets and Lupron alone did not work.
It almost certainly can only help to add Avadart ... If you have any T get thru for any reason (late for shot etc) it can be converted to DHT and DHT is the problem... young guys have high T to DHT ratio and almost never get PCa and old guys have a slow decline of T to DHT ratio and in time almost all get PCa .
Statement from New England Journal of Medicine and Harvard Medical:
" Men deficient in an enzyme called 5-alpha-reductase type 2 DO NOT develop an enlarged prostate ... ORPROSTATE CANCER. Without 5-alpha-reductase type 2, testosterone can’t be converted into DHT, which promotes prostate growth. (See “Two enzyme types,” below.)
Because finasteride tamps down 5-alpha-reductase type 2, researchers hypothesized that it would lower DHT levels and help prevent prostate cancer."
Avadart knocks out both pathways to convert DHT.... and finasteride did not cause CRPC in people followed for 18 years.
The group taking finasteride had 25% less prostate cancer ...
Anecdotally - I am74, T level isundetectable for years, and I am growing new hair. Seems like I have no DHT. And I know that DHT is the issue with hair loss.
I was am in titan....and its that kind of trial...but for metastatic disease...im in open label now....youve probably heard talk of erleada....has kept me earthside...for closing in on 5 years...
Yes- I believe that Erleada is brand name apalutamide. During my trial back in 2015-16 they were still referring to it as ARN-500. But since I have heard that daralutamide (similar) is safer in relation to the blood-brain barrier.
That arn-500 was the fda name ..its on my $16,000.00 bottles of pills...along with aplutimide....doesnt say erleada. Did they think the aplutimide was factor in heart problems....?....i went for stress test year after adt/aplutimide as i heard lupron could factor in heart problems.....doctors words" your heart wont kill ya....the cancer might"...gotta love em....
Statement from New England Journal of Medicine and Harvard Medical:
" Men deficient in an enzyme called 5-alpha-reductase type 2 DO NOT develop an enlarged prostate (also called benign prostatic hyperplasia, or BPH) OR PROSTATE CANCER. Without 5-alpha-reductase type 2, testosterone can’t be converted into DHT, which promotes prostate growth. (See “Two enzyme types,” below.)
Because finasteride tamps down 5-alpha-reductase type 2, researchers hypothesized that it would lower DHT levels and help prevent prostate cancer."
Avadart knocks out both pathways to convert DHT.... and finasteride did not cause CRPC in people followed for 18 years.
The group taking finasteride had 25% less prostate cancer ...
Dan, this is for information only. Micro metastasis is defined as: a metastatic tumor that is too small to be identified in a scan. These unseen cells are shed from the original tumor and travel the vascular and lymphatic systems in one’s body eventually to land and, colonize, and grow as the Mets in your lymphatic system. Good luck with your plan.
If so, I guess I've been miscommunicating. Thanks for the clarification. Actually, I don't know if they are mets at all, but they did show up as psma avid clusters.
May not be. Your Radiation Oncologist or Medical Oncologist would have an idea. With that said, you could have micro-metastasis, let’s hope not. I did with initial dx of PCa. When I went metastatic a year later, that convinced my MO that it was going on for a while and took that much time to rear it’s ugly head. Pretty much all the Primary Treatment failures are chalked up these little unseen metastatic cells moving about until they land.
My mo said that the perineal invasion....gave pathway for cancerous cells. (Micro tumors?)..to travel and the spine/lumbar is a good landing spot.....just...maybe why i ..others have mets at dx...even though tumor was confined to only one section of prostate...and relative low psa....16....but aggressive hystology..
Yep. Micro-metastasis was I term that I learned from my MO who spent his career in Research and Academia. He also told me in 2004 that at the time it was the most misunderstood term by the medical community. Why? Because it was not seen nor detectable with any scan. Anyway, I wish the best in killing the little bastards.
Good plan. Since you had severe cardiovascular SEs on apalutamide, your MO could press for approval for the darolutamide. Are you on some anticoagulant? You should also consider adding Nattokinase . (OTC)
Metoprolol and Atorvastatin, Meformin and baby aspirin- is one of these an anti-coagulant? But I read that the Atorvastatin doesn’t play well with duralutamide…so I’ll need to figure that one out too. THANK YOU!
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