Am I overthinking?

[myamic]

If PSA is being suppressed with Xtandi is it prudent to do something integratively or otherwise before PSA begins to rise and while one feels relatively strong?

[Magnus1964]

I would argue for mono therapy. Only use one treatment at a time. As long as xtandi is working, stay with it.

[Schwah in reply to Magnus1964]

I know you think you’re trying to help Magnus, but I really think it’s dangerous for you to continue that advise when there are numerous phase three studies that prove the opposite. People who follow that advise will surely die sooner because of it. This chart shows just how many more people would be dead in 3 years by listening to your advise. I urge you to stop your misinformation. It’s old school and demonstrably false. A lot of those white guys in the right would be yellow (dead) if they took your advise. If you want to play Russian roulette with your life, that’s your perogative but don’t promote it publicly please.

Schwah

Chart on lives saved by aging Zytega to ADT early on.

[Rocketman1960 in reply to Schwah]

Schwah, that would be great if the treatment options were many. But that is not the case.

[Magnus1964 in reply to Schwah]

The original question was should something else be added to xtandi which is working at the time. My response was if xtandi is working stay with it and don't add anything else. The STAMPEDE trail addressed the timing of zytiga not xtandi. I don't see how this trail invalidates my response.

I certainly would not advocate taking zytiga and xtandi at the same time.

[Rocketman1960 in reply to Magnus1964]

I would agree since there are only so many treatment options out there if the current one is working don’t mess with it. I am currently on Lupron plus Xtandi. Will ride it out till something changes dramatically.

[Tall_Allen]

Glad it's working for you. Playing whack-a-mole with metastases obviously has no value. If you've had bone metastases you should be using Zometa or Xgeva and you can consider adding Xofigo.

[LeeLiam in reply to Tall_Allen]

TA, I've heard you make similar comments about whack-a-mole before. I recently watched a video with Dr. Kwon, Mayo, who seems to disagree:

youtube.com/watch?v=DhxSwN3...(Not working as expected?)

I'd be interested in your take on this, especially from 4min 34 sec on.

[Tall_Allen in reply to LeeLiam]

If you read the OP's profile, you will understand why I wrote "Playing whack-a-mole with metastases obviously has no value. " He tried it and it didn't work.

As for the video, he thinks that targeted metastasis with SBRT can extend survival without ADT. There is no data to back up his opinion. It may be true, but it is irresponsible to treat patients like that outside of a randomized clinical trial (RCT). To date, Mayo has not had such a randomized clinical trial and has not even proposed one. His anecdotes prove nothing - what would have happened to those same patients if they had been treated differently? What about the anecdotes he didn't show on the video? There are some RCTs that others have done and we will have some early results next year.

This year, we have the following retrospective study (from Mayo!) that suggest no benefit to metastasis-directed therapy (MDT). It is not definitive, but is better evidence than Kwon's "gee whiz" anecdotes:

prostatecancer.news/2020/12...

Don't get me wrong - I absolutely believe that patients with less than 3 metastases should receive MDT if it is safe. Why not? But systemic therapy should not be withheld. We know systemic therapy increases survival.

[FrankyB4 in reply to Tall_Allen]

Could I ask a question about your reply above. I would appear to be recurrent oligo- post RP and post SRT. My PSMA is suspicious for 1 bone met at C6. Has not yet been confirmed by the CT or thin slice MRI I had so more imaging to come. Assuming it is a met, my RO says, as you do, SBRT alone to the met has not been proven to be of durable benefit so we wait until my PSA reaches 5.0 and start systemic treatment. Dr Kwon says that wastes the early detection and is palliative. Anecdotally, he says some men have been helped by SBRT alone. If he zaps my C6, ignoring the risks of comp fracture and myelopathy for the moment, without systemic treatment and it fails completely, what have I lost because I was hanging around anyway waiting for my PSA to get to 5. If it delays the rise of PSA that buys some time before I get to 5. I am sure I am missing something so I welcome your reply. I guess I think Dr. Kwon's approach has not been proven to be of no utility and I am hanging around to wait for palliation anyway so why not take a shot at SBRT. Further, he says that once the SBRT fails, he advocates being realistic and moving on to the "deluxe treatment", which I understand is somewhat comparable to the PEACE 1 approach- which you have kindly written about. I may not have the time to wait for the Stereo or Force RCT results. Thanks for your help. Lots to absorb and not my field.

[Tall_Allen in reply to FrankyB4]

You are making an error that many doctors make- treating PSA is not the same as treating prostate cancer. This explains in more detail:

prostatecancer.news/2020/07...

Most of your PSA is undoubtedly coming from the C6 met (if it is a met). But your cancer is everywhere - not just at the biggest most visible lesion. SBRT to C6 will lower your PSA but allow all your micromets to grow. It may seem like there is more control of your cancer, but that is just an illusion. The rest of your cancer has not been affected at all, so waiting for PSA to rise to some arbitrary number will actually allow your cancer to progress more than if you haven't treated it.

I understand that you are not even sure that c6 is a met. Wait for more info. If it is a met, you can start ADT and zap the met if it safe to do so (I don't know that it is safe).

Understand that Kwon has no evidence for his opinions, in fact, the evidence so far from his own institution (link above) says otherwise. For the life of me, I can't understand why they have not even started an RCT at Mayo.

[FrankyB4 in reply to Tall_Allen]

Thank you very much TA.

[Survivor1965 in reply to Tall_Allen]

All of this is confusing to me, sorry. I had mets on my spine during ADT and Kwon Zapped those with cryo in 2015 and then went on Xtandi with my Lupron (faied Zytiga) and now today still PSA undetectable. Just lucky I guess

[Tall_Allen in reply to Survivor1965]

What is confusing?

[spw1 in reply to LeeLiam]

This is actually a good interview with Dr Kwon. His view is not anecdotal when you hear him. Nor is what he advocates just about MDT. I like his approach of trying to cure PCa with a combination of therapies - wish someone had told us when my husband was diagnosed that we had the option of going aggressively at the PCa - a combination therapy. Dr Kwon seems to advocate MDT for the few patients for whom systemic may not be good or the patients have chosen the path for some reason. Even there, he seems to say the same kind of warnings as Tall_Allen here does. Thank you for sharing this video.

[LeeLiam]

TA, thanks for that explanation. Very clear.

My problem with systemic (ADT) with MDT is that we lose our PSA as a barometer.

[Tall_Allen in reply to LeeLiam]

Just the opposite. You lose PSA as your barometer when you do MDT.

[myamic in reply to Tall_Allen]

Thanks for the info and your dedication to the group

[Hidden]

It’s difficult to not overthink this convoluted disease. Go Xtandi..ride it out . We are all just kicking this can as far as we can . any day with no Psa is a good day for us pc guys . 🏋️

[Cooolone]

We all look for that hidden gem, needle in the hey stack... The Unicorn!!!

What's interesting is how many of us will grab at straws and yet disregard solid evidence that exists which we may follow and obtain those results. It would be an interesting psychology study for sure

Myself included at times in hitting certain crossroads with this disease...

But at some point, the reasoning needs to follow data available. Don't get me wrong, I have a presentation of my PCa that is extremely rare, rare enough to not offer any real prognosis for the condition as there are no patient histories to follow or allow for that. So naturally I'm conflicted with SOC because by nature it is aligned with the middle or averages of diagnosis and care. Not to the anomalies... Again, the journey at some points requires surrender to treating with know variables, with prescribed results we hope to achieve. The unicorns be damned and unobtainable! Lol

It's not a bad thing though... Hitting the disease hard with what's available today has some good results most of the time. Not always, but most... Even for us advanced patients. Treatment lines need to be considered with our position as advanced patients, considering diagnosis and staging and the dance of therapies as they may be utilized and applied not only now, but what may come in the future. Qualifying and Exclusions apply sometimes based upon the path already traveled. So shooting blindly with therapies may have consequences later too. Why burn lines when not necessary? Anyways...

So yes, we can think way too much, we can get lost in the forest, and that's ok. But we should not completely disregard those we entrust with our care. It's perfectly fine to question and challenge, and even at times overrule. But not dismiss the data from tracking thousands of patients.

Anyways, just thoughts...

Best Regards

[Kevinski65]

I've watched Kwan on utube. I thought he made many assumptions that went against standard treatment. I'm almost 10 years out on Xtandi and Lupron. I'm M1 stage, PSA 31 at diagnosis, stage 4. My PSA went up years back on Lupron alone then added Xtandi after like 2.5 years. I'm at .04 PSA. Hate the side effects but I'm still here. I took a lot of supplements, probably just made me poor.