Hi all. First posting here. I "had" nmCRPC and was put on Erleada about a year ago. It worked great for a while. My PSA went down to .15. Then three months ago it went to .3. In addition, I was having a great deal of problems with side effects. Basically, I would feel good for a few days, and then have 3-4 days that all I could do is nap all day. My Oncologist had me go down to 50% Erlead dose. I felt fabulous the first week, best in years.
Background: I was diagnosed in 12/15 and did radiation summer of 2016. Had such bad side effects on Zolodex that my doctor, who has 4000 patients said my side effects were 50% worse than any patient he had seen. Turned out I had internal bleeding from the Chemo which a colonoscopy sealed up. Added Casodex but that was so bad I was suicidal. Last year they took me off Casodex and put me on Erleada when my PSA started rising again. So have been on Zoladex and Erleada since last year.
So this leads me to the present. My visit with my oncologist was the third month in a row my PSA has risen. from .15 to .3 to .4 to .6. I thought he would put me back on Erleada, but he said he didn't think that would work. So he is recommending Xtandi (along with continuing Zoladex).
My thought is I just lost 3 years of my life. I looked at Erleada lasting at least the median of 40-48 months, then Xtandi for 20 months, then Chemo for 18 months, then I guess hospice. So I was calculating 8-10 years, and now I think it would be under 5 most likely.
Am I wrong? What has the progression from starting Xtandi been for any of you here? I feel like I got kicked in the gut. I asked my doctor if the scans have been clear, does he still think it is localized. He said the rising PSA pretty much says it has spread, even if we can't see it yet. So I guess I am now Stage 4?
Any insight on the progression (and I know it is different for all of us) would be helpful. Thanks.
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The newer scans may pick this up...TA put out something on a reply from his blog about scans and which was best... why not find out if there is any mets and where?? Also, you mentioned getting radiation--was it adjuvant/ whole pelvic radiation?? Some things to think about because maybe if you had limited radiation, and this is still within the pelvic area, then you could look at adjuvant radiation...
I'm sorry to hear of the tough time you've had. Can you post any more information about yourself? How old are you? What was your PSA and Gleason score at the time of diagnosis? Was the radiation given in hopes of a cure?
I believe that Xtandi and Erleada are both androgen receptor inhibitors that block the uptake of testosterone into the nucleus of the tumor cells. Xtandi may be stronger and work after Erleada has failed, but may also be subject to the same kind of drug resistance. There are some other treatments that may also help at some point including Zytiga, chemotherapy, Lu-177-PSMA, and some of the immunotherapies. The drugs can have spectacular results for a few patients, so-so for many, and not much at all for others.
I don't know how long you'll be able to hold on but I'm sure it will be for some years, and I hope that you'll be able to make the most of those years - enjoying friends, family, and as many of the things you like to do as possible. After all, it would be terrible to spend the last years of life wishing you were dead - which is something that a lot of us do.
35 years ago, not one of the drugs that you've taken or might take in the future were available so, in a way, you've already outlived the natural history of your prostate cancer. I hope at least one or two of the drugs will work well and give you even more extra life. You might also begin to consider clinical trials. Most trials don't pan out, but some do and you can get unexpected help from them.
Thank you for the reply Alan. I am 65, was dx'd 4 years ago.
PSA at dx was 55. Gleason was mostly 8 but one 9. Yes, they thought radiation would eliminate it and were frankly surprised it did not. I went to one of the best radiologists in Seattle for it.
I guess I look at treatments as a progression with milestones. 1) Diagnosis, 2) radiation\surgery\start of ADT (Lupron or Zoladex), 3) Casodex added, 4) Erleada when it becomes CR, 5) Xtiga when Erleada fails, 6) chemo when Xtiga fails, 7) then pretty much no options.
I figured I would beat PC and it would be a long term maintenance situation. That is what happened when I contracted Carcinoid Syndrome when I was 34. I fought that for 30+ years to a standstill. Everytime it got critical something else would come out that would put it on hold again. I still have it, but it is pretty much dormant and I don't take anything for it even. They took me off chemo injections in October 2015. I got the dx of PC in December 2015. So my whole life since I was 34 has been cancer shadowed. I've nearly died twice with Carcinoid.
So I've been fighting Cancer for most of my life. I have a pretty practical view of this. There is a progression, and I feel I am running down these progressions faster than I should be. I would hope somewhere I will hit a pause.
That's quite a story. I'm surprised that your radiation oncologist expected the radiation to work on a man with a high risk Gleason score and a PSA of 55. It might have been worth a try, but I'd have thought the odds were against success.
With a PSA of 55 I have to wonder if you were really non-metastatic at the time of the radiation. It's very possible that you weren't and the reason your PSA went so low after treatment was not because the radiation killed all but a tiny bit of cancer, but that the radiation killed a lot of it and the Zoladex hammered the rest - driving down its activity and killing some. I think some doctors do some routine tests, like a bone scan, and if it comes back negative conclude that the patients are non-metastatic, which I don't think is always the case and is probably rarely the case when PSA is high.
You might benefit from a second opinion. In Seattle, if you're not already there, you might want to make an appointment at the Fred Hutchinson Cancer Research Center. It's nationally, if not world famous for cancer research and treats all kinds of cancer. They'll also be running some clinical trials there and will have people who may be willing to help guide you through the process of finding one there or somewhere else. Here's a list of trials they are currently running for CRPC: fredhutch.org/en/research/c...
Here's a link to the National Cancer Institute's Cancer Information Service that can also help and steer you more info.
I'm impressed with your courage and fortitude in the face of all you've been through. I hope you get your ten years, and then you get ten years more, and in any case I believe you'll make the best of whatever you get.
There is a new drug just approved 3 weeks ago for non-metastatic CRPC, called Nubeqa (darolutamide). The advantage for you is that it doesn't cross the blood-brain barrier and doesn't activate the GABAa receptors like Xtandi does, so it may have fewer psychological effects (fatigue, loss of mental acuity). It may also stay potent longer because it doesn't incur resistance the same way Erleada or Xtandi does.
Appears you have become resistant to 2nd generation AR drugs,,,Erleada(apalalutimide) being one of several,,,Xtandi, Zytiga, and even Darolutimide,,,although Tall Allen suggestions are well taken regarding blood brain barrier and possible having possible resistance to resistance.
Incidentally Darolutimide is only FDA approved if not castrate resistant. If one becomes castrate resistant, access becomes a bit more problematic.
Non-penetration of blood brain barrier benefit may lessen fatigue as experienced with Erleada, additionally tendency to seizure and falls as with it and Xtandi, its lookalike sister.
Ask your Physician to prescribe an AR-V7 test. If positive this indicates either innate resistance or you have become resistant to these drugs.
If negative you have apparently become resistant, as Erleada had worked for a while for you. These drugs are notorious with time causing AR-V7 to become positive from a desirous negative. A positive on this test is not what we wish for.
Google these 2 drugs(placing (Prostate Cancer) in search argument) and read up on these medications that have indicated some success in resetting this resistance.
Indomethacin. A Gout medication. UCSF may be looking at this.
Niclosimide. A tapeworm medication. UC Davis is running a trial on this drug to demonstrate this reset mechanism and if it works. Drug requires special privileges to obtain. Uncertain as to why.
Taxane chemo has been known to do this reset. However in your case you have already been there and have had a bad reaction.
Casodex may still work for you in spite of AR resistance,,,your Physician may laugh you off,,,my 2 MO’s did me. They were incorrect.
Let’s us know what your Physicians have to say on these thoughts. They may require persuasion.
Correction well taken. I meant exactly what you say, castrate resistant, non metastatic. Thank you. I am metastatic, therefore currently not eligible which is disappointing.
Aside from not crossing the blood brain barrier, do you know how daralutimide acts differently in its operation from Xtandi - including how it can avoid resistance vis-a-vis Xtandi?
Basically, the -lutamides block the androgen receptor so the testosterone can't bind to it. Problem is, it's hard to block the receptor without stimulating it, and xtandi (enzalutamide) and erleada (apalutamide) often fail because the receptor can mutate to be receptive to them, and so they're as bad as testosterone. The Nature article (thanks TallAllen!) says that Darolutamide is designed to keep this switch from antagonist (blocker) to agonist (stimulator) from happening, plus it doesn't cross the blood brain barrier and cause the crippling fatigue of the others.
This switch from antagonist to agonist is not the only way xtandi and erleada fail (AR-V7 is another), but it's probably worth a try if you can get it prescribed. Actually, while your scans are still negative for Mets you should be very eligible.
Good luck on your treatment, please keep us posted!
Would like to thank all for their comments and suggestions. In looking at my posts I incorrectly used the term xtyga. I of course meant xtandi. I also did not put Zytiga on the progression timeline.
Diagnosis
Radiation\surgery\ADT (Lupron or Zoladex)
Casodex\ADT
Once Castrate Resistant:
Erleada\Xtandi\ADT
Once Metastatic:
Zytiga\ADT
Chemo
I'm startin Xtandi today and will be doing scans soon. Will update as their are results or questions.
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Erleada vs Xtandi - what are the differences? 
Xtandi stomach side effects
Failed Docetaxel, just like everything else.
Stopping docetaxel at just 4 per Dr - good move or not?
