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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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Mrs K | @klein505 | Apr 28 3:28pm
In reply to @surftohealth88 "@mlabus3 Thanks so much for stopping by @mlabus3 🙂 Yes ! It would be wonderful if..." + (show)
Profile picture for surftohealth88 @surftohealth88

@mlabus3

Thanks so much for stopping by @mlabus3 🙂
Yes ! It would be wonderful if we can stay in touch here and compare plans and results and possible SA .

We had our last consultations 3 days ago with a RO and to be honest, of all 3 specialists he gave us the most information, offered the most support and answered to all of the questions without any rush AND he himself offered ordering PSMA test beforehand so that we can have it reserved in case we need it in a month or 2. I asked surgeon if that could be possible but he said no need for that , he will order one when my husband hits PSA 0.2 and I asked teasingly :"Oh, and than he will have PSMA done the same day" ? He: "Emmm, I mean, huh, maybe not the same day, but I could call and see ..." *blah blah
But, never mind - never mind that he is responsible for "iffy margin" left
behind *sigh ...

RO will order PSMA at 0.1 so that appointment is ready once my husband hits 0.2 and than he will start Orgovyx the same day of having PSMA because even if the scan does not show anything, my husband will proceed with salvage RT.

I forgot exact number of RT sessions suggested but the amount of Gys will be 66. There is a span from 64 to 70 that can be used, he prefers 66 instead of 70 due to less chance of SA. The other excellent RO in that hospital uses 70 Gys though. I guess it is all like everything else with PC - a balancing act *sigh. One wants to kill the cancer but not harm the patient in that process.

My husband will have gold markers inserted (fiduciary markers), and no spacer. I think that RO said that VMAT machine will be used. I will have to go and check my notes.

So the plan is to wait for the next test mid May and see what PSA is doing. In our case however it is going steadily up unlike yours and you are in much better position according to some papers. In your case it might very well be that some benign tissue was left or even if it is a cancer it is obviously some indolent tiny tumor that will be eradicated with an ease 👍🍀 ! For some people PSA levels off at around 0.5 and stays there indefinitely and I am wishing you that scenario with all my heart 💗

PS: None of the 3 doctors ( MO, surgeon, RO) suggested additional ARPI even though I asked them about it. I asked about Nubeqa since it has the least of SA and unfortunately it is not still approved for this use - it is still in trials.

Wishing you all the best 🍀 and please stop by again with an update 🙂 !

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@surftohealth88
Very frustrating for you. I wonder that they won't consider darolutamide, even if its not approved for BCR recurrence. Doctors commonly prescribe drugs "off-label", if they want to .

Maybe the docs are employed by the hospital, and the hospital won't let them prescribe 'off label' (could be a liability issue there) or maybe they know insurance companies won't cover non-approved drugs, so they don't prescribe them. Guessing the ARPI's aren't generic yet ($$$)

Crossing my fingers that your husband's PSA plateaus, or better yet, goes back down.

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heavyphil | @heavyphil | Apr 28 4:19pm
In reply to @surftohealth88 "@heavyphil Hi Phil : ))), This is a link to the study that was done on..." + (show)
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@heavyphil
Hi Phil : ))),
This is a link to the study that was done on this institution and they now follow those findings.
https://www.redjournal.org/article/S0360-3016(05)01707-4/fulltext
Prostate bed has some movements too and markers just add to precision targeting. Yes, every time a scan is done before treatment but those markers give them more precise adjustments.

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@surftohealth88 Well, anything that adds to the precision of the dosage has got to be a good thing.
I think the newer machines - mine was a Varian TruBeam - incorporate software into that cone beam scan before treatment in order to make these positional adjustments daily; as far as making them ‘dynamic’ - ie, during treatment I don’t think so…
And you know, that article was 21 years old so who knows how far they’ve come?
But if your RO says to do it - and you trust him to know what he’s talking about - you do it. I certainly would !
Best,
Phil

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surftohealth88 | @surftohealth88 | Apr 28 4:23pm
In reply to @klein505 "@surftohealth88 Very frustrating for you. I wonder that they won't consider darolutamide, even if its not..." + (show)
Profile picture for Mrs K @klein505

@surftohealth88
Very frustrating for you. I wonder that they won't consider darolutamide, even if its not approved for BCR recurrence. Doctors commonly prescribe drugs "off-label", if they want to .

Maybe the docs are employed by the hospital, and the hospital won't let them prescribe 'off label' (could be a liability issue there) or maybe they know insurance companies won't cover non-approved drugs, so they don't prescribe them. Guessing the ARPI's aren't generic yet ($$$)

Crossing my fingers that your husband's PSA plateaus, or better yet, goes back down.

Jump to this post

@klein505

Thanks Mrs.K for your well wishing and for giving me support and hope. 💗

Who knows what is behind ARPI not being available, but I am sure that $$$ and insurance play a big role, as always. Even Orgovyx was hard to get until very recently ! I just thank God that my husband is on Medicare since many of those treatments would be of limit for us, probably even Orgovyx.

Oh how wonderful it would be that wheel of fortune turns finally in our favor 🌈✨ !!! *sigh After 35 years of adversity one would think that it is high time for that to happen ... 🤷‍♀️ Some days I feel like I am stuck in some Greek tragedy play and just can not find the way out of labyrinth that has multitude of painful challenges waiting behind every corner ...

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surftohealth88 | @surftohealth88 | Apr 28 4:38pm
In reply to @heavyphil "@surftohealth88 Well, anything that adds to the precision of the dosage has got to be a..." + (show)
Profile picture for heavyphil @heavyphil

@surftohealth88 Well, anything that adds to the precision of the dosage has got to be a good thing.
I think the newer machines - mine was a Varian TruBeam - incorporate software into that cone beam scan before treatment in order to make these positional adjustments daily; as far as making them ‘dynamic’ - ie, during treatment I don’t think so…
And you know, that article was 21 years old so who knows how far they’ve come?
But if your RO says to do it - and you trust him to know what he’s talking about - you do it. I certainly would !
Best,
Phil

Jump to this post

@heavyphil
I guess this is just how they do it "here".
Even when we had adjuvant RT consultations with different RO , markers were mentioned. As you say yourself - whatever can possibly help with a precision is probably a good thing 🤷‍♀️. I will have to go back and listen to notes to refresh my memory about the type of machine, I know that I mentioned IMRT and RO than said actually it is V- "something" , forgive my ignorance *blush. I was trying not to interrupt conversation too much since my husband was asking a lot of questions himself ( which made me very happy to see).

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surftohealth88 | @surftohealth88 | Apr 28 4:47pm
In reply to @klein505 "@surftohealth88 Very frustrating for you. I wonder that they won't consider darolutamide, even if its not..." + (show)
Profile picture for Mrs K @klein505

@surftohealth88
Very frustrating for you. I wonder that they won't consider darolutamide, even if its not approved for BCR recurrence. Doctors commonly prescribe drugs "off-label", if they want to .

Maybe the docs are employed by the hospital, and the hospital won't let them prescribe 'off label' (could be a liability issue there) or maybe they know insurance companies won't cover non-approved drugs, so they don't prescribe them. Guessing the ARPI's aren't generic yet ($$$)

Crossing my fingers that your husband's PSA plateaus, or better yet, goes back down.

Jump to this post

@klein505
Markers stay forever, unfortunately. Supposedly they do not do any harm since they are made of gold. I will have to believe that. 😬

PS: I wrote reply to your other post too, but it is "under review" - I probably went overboard with smilies , as usual lol. It should be posted here very soon ...

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