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SHEEESSHHHH - oh well ... : (

Posted by surftohealth88 @surftohealth88, 3 days ago

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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Profile picture for xahnegrey40
xahnegrey40 | @xahnegrey40 | 3 days ago
In reply to @surftohealth88 "@xahnegrey40 Hi @xahnegrey40 : ))). Thanks for stopping by and for your comforting words, it is..." + (show)
Profile picture for surftohealth88 @surftohealth88

@xahnegrey40

Hi @xahnegrey40 : ))). Thanks for stopping by and for your comforting words, it is very much appreciated 💗.

The thing is, Mr.Surf does not have prostate any more, so there is very little else that can rise his PSA except leftover cells or some "new" bad cells 😣. Viral infection or high inflammation of another origin could possibly cause rise of PSA from other sources (like salivary glands or perianal glands , or periurethral glands etc.), but this sustained rise over couple of months is pretty troubling.

I, of course, hope for the best, but we shell see ... 🍀 His MO told us that he might want to start RT at PSA 0.1 due to his high risk features, so 0.05 is not that far from that "number" *sigh ... It doubled in the month before so if it doubles this month we are at 0.1 just like that 😕.

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@surftohealth88

well I see now..still, if there is some PC activity, then you are getting it early..also, Mr Surfer is very lucky to have a very dedicated advocate as you seem to be !..that is quite luxury..I am envious..I am on my PC journey solo..a bit terrifying at times but so far doing well..somehow made right moves early on.

WEll I hope whatever is going on is resolved easily and quickly !! best of luck to you both !

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surftohealth88 | @surftohealth88 | 3 days ago
In reply to @jeffmarc "I realize he does have a very serious case. I’m not sure most doctors would want..." + (show)
Profile picture for Jeff Marchi @jeffmarc

I realize he does have a very serious case. I’m not sure most doctors would want to do something at .05, but the doubling rate is pretty fast and that is what you really need to go by. .026 and 40 days later hitting .05 is a very fast doubling rate. I wonder if the doctor might want to wait for one more test just to make sure but adjunct radiation was something you were looking at originally and it probably is time to do it soon.

So sorry to hear this is happening. I know the first time I went on ADT, a 6 month shot, It wasn’t a big deal while I was working and didn’t even notice it. When I went on it full time a few years later the pressure of my job was too much so I retired.

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@jeffmarc

Thanks Jeff for sharing your thoughts 💗.

Yes, that doubling time is what really shocked me ! There are some papers that dispute "uPSA" doubling time importance but when snake bites you once, you do not ignore even the tiniest snakes. 😑

My husband can not retire unfortunately, so we really hope it will not come to that. *sigh

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surftohealth88 | @surftohealth88 | 3 days ago
In reply to @xahnegrey40 "@surftohealth88 well I see now..still, if there is some PC activity, then you are getting it..." + (show)
Profile picture for xahnegrey40 @xahnegrey40

@surftohealth88

well I see now..still, if there is some PC activity, then you are getting it early..also, Mr Surfer is very lucky to have a very dedicated advocate as you seem to be !..that is quite luxury..I am envious..I am on my PC journey solo..a bit terrifying at times but so far doing well..somehow made right moves early on.

WEll I hope whatever is going on is resolved easily and quickly !! best of luck to you both !

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@xahnegrey40

Thanks so much for your kind words 💗🧸 and I admire your strength for doing it solo and making good choices along the way ! It is remarkable how fast and how much we all have to learn in such a short period of time - we all deserve to get "oncology apprentice" certificate or something like that ; ).
Thanks also for good luck wishes 🤗 - sending you back best regards and blessings.

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heavyphil | @heavyphil | 2 days ago

Well Surf, you’ve been on this from the get-go, know the deal and were probably preparing for this day.
You’ve done all the work - and then some!!
Now let those experts do what they do best.
And since this is YOU we’re talking about, I am sure you will follow the Ronald Reagan doctrine: TRUST…BUT
VERIFY!😉
Phil

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surftohealth88 | @surftohealth88 | 2 days ago
In reply to @heavyphil "Well Surf, you’ve been on this from the get-go, know the deal and were probably preparing..." + (show)
Profile picture for heavyphil @heavyphil

Well Surf, you’ve been on this from the get-go, know the deal and were probably preparing for this day.
You’ve done all the work - and then some!!
Now let those experts do what they do best.
And since this is YOU we’re talking about, I am sure you will follow the Ronald Reagan doctrine: TRUST…BUT
VERIFY!😉
Phil

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@heavyphil

Ha ha, yes - oh how wonderful it would be to trust and be sure that experts would do it amazingly well.

Thanks for stopping by and for trying to make me feel confident 💗🤗, much appreciated ! Regarding "preparation", you know how it is, no matter how much we prepare it is always a blow below the belt (literary and figuratively).

I am angry at the universe at the moment - perhaps better than being engulfed in sadness ? I do not know, I do not know how am I still "normal" to be honest. lol After so much turmoil in our lives I hoped for at least having boring and quiet old age. But nope ...

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heavyphil | @heavyphil | 2 days ago
In reply to @surftohealth88 "@heavyphil Ha ha, yes - oh how wonderful it would be to trust and be sure..." + (show)
Profile picture for surftohealth88 @surftohealth88

@heavyphil

Ha ha, yes - oh how wonderful it would be to trust and be sure that experts would do it amazingly well.

Thanks for stopping by and for trying to make me feel confident 💗🤗, much appreciated ! Regarding "preparation", you know how it is, no matter how much we prepare it is always a blow below the belt (literary and figuratively).

I am angry at the universe at the moment - perhaps better than being engulfed in sadness ? I do not know, I do not know how am I still "normal" to be honest. lol After so much turmoil in our lives I hoped for at least having boring and quiet old age. But nope ...

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@surftohealth88 Surfer, there is nothing boring or quiet about you! Why would old age be any different??
😘😘😘
Phil

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surftohealth88 | @surftohealth88 | 2 days ago
In reply to @heavyphil "@surftohealth88 Surfer, there is nothing boring or quiet about you! Why would old age be any..." + (show)
Profile picture for heavyphil @heavyphil

@surftohealth88 Surfer, there is nothing boring or quiet about you! Why would old age be any different??
😘😘😘
Phil

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@heavyphil
😂💗🤗 ahahaaaa, OK, you made me laugh now - thanks bud. : )))

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ucla2025 | @ucla2025 | 2 days ago
In reply to @mjp0512 "Hey surf...is this a repeating trend or just a sample of 2? When you're dealing with..." + (show)
Profile picture for mjp0512 @mjp0512

Hey surf...is this a repeating trend or just a sample of 2? When you're dealing with usPSA down to the thousandths, an infected splinter can show a detectable rise. In any case, hope you guys get the treatment and drugs you want. FWIW, my Medicare Part D covers Orgovyx and Nubeqa. Max out of pocket is $2,100 (which I meet in January with the first refill of the year). Not that they actually work for me, but then again, I'm weird. 🤣🤣🤣

As always, wishing you guys the best!

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@mjp0512 Would you mind sharing which Part D plan you have? My husband is going on Medicare soon and I am very concerned about his Orgovyx and Nubeqa being covered. Thank you!

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mjp0512 | @mjp0512 | 2 days ago
In reply to @ucla2025 "@mjp0512 Would you mind sharing which Part D plan you have? My husband is going on..." + (show)
Profile picture for ucla2025 @ucla2025

@mjp0512 Would you mind sharing which Part D plan you have? My husband is going on Medicare soon and I am very concerned about his Orgovyx and Nubeqa being covered. Thank you!

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@ucla2025 - Sure...I'm on regular Medicare with a Part D plan through Humana. You have to be very careful when choosing, though. Be sure to review EACH company's formulary. Medicare.gov is a helpful place to start but it's not 100%. Check the formulary. Also, just because Humana covers me here does not mean they'll cover you there. (I'm on the other side of the country). I absolutely dread October open enrollment every year. Medicare and supplements are pretty stable, but Part D plans change every year. Good luck 👍

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ucla2025 | @ucla2025 | 2 days ago
In reply to @mjp0512 "@ucla2025 - Sure...I'm on regular Medicare with a Part D plan through Humana. You have to..." + (show)
Profile picture for mjp0512 @mjp0512

@ucla2025 - Sure...I'm on regular Medicare with a Part D plan through Humana. You have to be very careful when choosing, though. Be sure to review EACH company's formulary. Medicare.gov is a helpful place to start but it's not 100%. Check the formulary. Also, just because Humana covers me here does not mean they'll cover you there. (I'm on the other side of the country). I absolutely dread October open enrollment every year. Medicare and supplements are pretty stable, but Part D plans change every year. Good luck 👍

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@mjp0512 Thank you for your response, very helpful.

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