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SHEEESSHHHH - oh well ... : (

Posted by surftohealth88 @surftohealth88, Apr 15 5:54pm

I just hate when my worry proves to be "correct" *sigh.

We got new uPSA results today and it is 0.05 : (((. PSA rose from 0.026 to 0.05 in 40 days so it is not an anomaly, something is going on.

Luckily we made app. with MO and our urologist last month since I knew that getting app. is measured in months, so we have consultations next week . We also contacted RO and are waiting for app..

My husband is in much better mental place than me (as always) so he is in action mode ("I probably have BCR so lets zap it !"), and I have to make myself get into that zone too - I mean, it is a must ... : /

Based on all that I read so far we decided to do IMRT treating the whole pelvic floor and nodes and add Orgovyx and Nubeqa for at least 6 mos. We hope that we will be able to get those particular meds since my husband is on Medicare.

All in all, I just wanted to give an update ( I wish it was positive one) and will let you know what doctors say next week.

Wishing everybody nice and relaxing day 🌼💗🙂

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mjp0512 | @mjp0512 | 19 hours ago
In reply to @surftohealth88 "@dhasper Hi @dhasper - we had the first app. today with MO - it seems that..." + (show)
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@dhasper
Hi @dhasper - we had the first app. today with MO - it seems that Nubeqa is still in trails for this particular use (high risk BCR salvage RT + ADT + darolutamide /ARASTEP study (NCT05794906)/ , so it is not yet standard of care. For that reason, Nubeqa is out of picture as possible intensification of a treatment.

Orgovyx was agreed upon (thanks God) - it will be 6 mos or more depending what PSMA shows.

Tomorrow we have app. with surgeon - I will let you know if we discover anything new.

On the bright side, estrogen is now well known and accepted. We asked about it and it is available but of course , everybody is very cautiously optimistic because for example no real data exists about estrogen and salvage RT combo. It will be some time before it becomes available in that context.

All in all - it was nice consult because MO is really kind and nice person, calm and knowledgeable and always gives hope.
BUT, without PSMA the whole plan is just hypothetical at this point, and for that we might need to wait till we at least hit 0.1. He said it might not even happen, but I think he is just too sweet and wanted to prevent me from tearing up 😋.

Jump to this post

@surftohealth88 = Hi surf. Did they recommend an alternate to Nubeqa for ARPI or no pathway inhibitor at all?

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heavyphil | @heavyphil | 15 hours ago
In reply to @surftohealth88 "@dhasper Hi @dhasper - we had the first app. today with MO - it seems that..." + (show)
Profile picture for surftohealth88 @surftohealth88

@dhasper
Hi @dhasper - we had the first app. today with MO - it seems that Nubeqa is still in trails for this particular use (high risk BCR salvage RT + ADT + darolutamide /ARASTEP study (NCT05794906)/ , so it is not yet standard of care. For that reason, Nubeqa is out of picture as possible intensification of a treatment.

Orgovyx was agreed upon (thanks God) - it will be 6 mos or more depending what PSMA shows.

Tomorrow we have app. with surgeon - I will let you know if we discover anything new.

On the bright side, estrogen is now well known and accepted. We asked about it and it is available but of course , everybody is very cautiously optimistic because for example no real data exists about estrogen and salvage RT combo. It will be some time before it becomes available in that context.

All in all - it was nice consult because MO is really kind and nice person, calm and knowledgeable and always gives hope.
BUT, without PSMA the whole plan is just hypothetical at this point, and for that we might need to wait till we at least hit 0.1. He said it might not even happen, but I think he is just too sweet and wanted to prevent me from tearing up 😋.

Jump to this post

@surftohealth88 So he is going to start Orgovyx now?
Phil

REPLY
1 reply
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dhasper | @dhasper | 14 hours ago
In reply to @surftohealth88 "@dhasper Hi @dhasper - we had the first app. today with MO - it seems that..." + (show)
Profile picture for surftohealth88 @surftohealth88

@dhasper
Hi @dhasper - we had the first app. today with MO - it seems that Nubeqa is still in trails for this particular use (high risk BCR salvage RT + ADT + darolutamide /ARASTEP study (NCT05794906)/ , so it is not yet standard of care. For that reason, Nubeqa is out of picture as possible intensification of a treatment.

Orgovyx was agreed upon (thanks God) - it will be 6 mos or more depending what PSMA shows.

Tomorrow we have app. with surgeon - I will let you know if we discover anything new.

On the bright side, estrogen is now well known and accepted. We asked about it and it is available but of course , everybody is very cautiously optimistic because for example no real data exists about estrogen and salvage RT combo. It will be some time before it becomes available in that context.

All in all - it was nice consult because MO is really kind and nice person, calm and knowledgeable and always gives hope.
BUT, without PSMA the whole plan is just hypothetical at this point, and for that we might need to wait till we at least hit 0.1. He said it might not even happen, but I think he is just too sweet and wanted to prevent me from tearing up 😋.

Jump to this post

@surftohealth88 Thanks so much. I have my PSA and PSMA in a few hours and tomorrow meet with radiologist. I will keep you updated also.

REPLY
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surftohealth88 | @surftohealth88 | 9 hours ago
In reply to @heavyphil "@surftohealth88 So he is going to start Orgovyx now? Phil" + (show)
Profile picture for heavyphil @heavyphil

@surftohealth88 So he is going to start Orgovyx now?
Phil

Jump to this post

@heavyphil
Huh - you would think !!!! Now all of the sudden we should wait some more - for one more PSA next month *sigh

You know all of that "personalized" approach for high risk patients is just an empty gibberish, it seems. Somebody somewhere decided that BCR is at 0.2 and that became magical number - it is "standard of care" and one can argue their little frighted heart out and point to papers that say that HR patients need to have extra early salvage (between 0.1 and 0.2 ) but : "we are still not even 0.1 " - I mean yes BUT, if this doubling time continues he will be 0.1 in May . Oh BUT - "uPSA doubling time has no real clinical value predicting real progression". Well, I must admit I did read that in papers, so I could not say anything there *mehhhh.

And than : "maybe this will just plateau at 0.05 and stay there".
(In my head I think yeah, for some other lucky person it is a possibility).

So, we wait May uPSA and go from there, unless tomorrow's zoom with RT guy gives us different prospective but I do not think so.

My personal opinion is that as time passes they are all somehow readjusting and re-evaluating real need for aggressive, early or intensified treatments - I think that they are now seeing that more is not better , especially with emergent of new advanced medications and modalities. 🤷‍♀️

For example, for long time trend was of having 6 mos ADT with sRT , now there is a new idea developing that for low risk patients ADT might not be necessary at all and that 6 mos it enough for high risk . ( https://www.urotoday.com/video-lectures/asco-gu-2026/video/5413-poseidon-meta-analysis-re-examines-the-role-of-adt-with-salvage-radiation-for-prostate-cancer-amar-kishan.html)

At the end - EVERY day some new study shows something new and even opposite of what was considered "the best" just last year.

So - "keep on swimming, keep on swimming 🎼" (Dory song from "Finding Nemo" ) lol

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