SHEEESSHHHH - oh well ... : (
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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@ucla2025
Both drugs are fully covered and I’ve been on both for three years. Nubeqa Is very expensive. Almost $13,000 a month. In January when I make my first order for Nubeqa They charged me around $2100 which is the maximum you pay for prescription drugs all year with Medicare. As a result, I order my Orgovyx and it’s free, as are all the other prescriptions drugs, I order for the rest of the year.
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4 ReactionsSounds to me like you are doing everything you can to stay on top of the situation. You may already know this but healthunlocked has a very active advanced PC discussion group and some of them go really deep into the research, trials, etc. I find it not only helpful but super interesting. I mention this because, like you, I want to know as much as I can about PC so I can help us navigate these challenging waters. Then on other days I just want someone to throw me a life raft!
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7 Reactions@jeffmarc Thanks very much for your reply.
@ucla2025 Yes, Orgovyx is very expensive, but the cost can be offset to varying degrees depending on what insurance company you have for Part D. Look at your insurer's formulary. (If you don't have one, get them to send you a print copy or provide a link.) If your insurer does cover Orgovyx at any level, you won't pay more than $2100 out-of-pocket in any given year.
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3 Reactions@surftohealth88
Surfer, Phil's right! hahaha You are a GREAT support system for hubby and I'm sure he appreciates it, even though he may not show it at times. lol
Keep it going, stay aggressive. It's WAY better than the alternative. Good luck to you guys! ❤️
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4 Reactions@dpayton
Thanks so much for your well wishing, kind words and encouragement 💗🤗 It is appreciated a LOT : ))) ! Yes, one has to permanently be in gung-ho mood since otherwise PC wins by default 😑. Mr. Surf is extremely appreciative but would rather not think "about it" which is fantastic self-preservation tactic regarding mental health but when cancer is in the picture that tactic can be dangerous *sigh So, it is very tough balancing act 😬 and I am crossing Grand Canyon on very thin rope lol . Luckily so far he "activates" full force when going gets tough and than sails through obstacles with perfect speed and form, ha ha. I just have to work on my "happy" face for his sake and my family's sake in general. Soooo darn hard though ...
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3 Reactions@surftohealth88
We're all here for you and hubby. Actually we're all here for each other and I love that! I do understand(I think) what you're going through. But a thin rope over the canyon? HAHA Yikes! 🙂 The good thing about hubby is he'll attack it if he needs to. He's not giving up. But YOU are doing an incredible job by keeping up on things in case it rears it's ugly head. I keep telling all my friends how you are such an amazing support system. It's really something to see... ❤️
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5 Reactions@dpayton
Aaawww 🥲💖 THANK YOU !!! 🤗🌺
You are really too kind, I am just trying to survive since I can not live (and I would refuse to live ) without my soulmate - so "no stone shell be left unturned".
*hugssssssssss
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1 ReactionHi Surfer, i had the whole pelvic radiation several months after surgery. Also, im on Firmagon and Abi for….ever.
I’ve been undetectable since Nov ‘25. I’m very happy about that but this whole PCa business is BS.
I am hoping for the best for you and your husband!! 🙂
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6 Reactions@johndavis60
Thanks John for stopping by 💗😊 !
I am so glad to hear that your results are so good and it is very inspiring :))).
Oh yes, BS galore indeed *sigh, PC entity is like one huge maze with random well hidden exits and occasional bench offering rest of "undetermined length" in time and with possible added surprise obstacles "just for fun" 😔.
Now that you are here : ), I have one question for you : ) - since you are still working (and my hubby is too), were you able to work full time during your RT ? He will be having ADT for sure and perhaps ARSI too. I know that everybody is different, but I would appreciate your input 🌺 : ))). Thanks so much in advance !
PS: Did you finish your beautiful bridge painting yet ? : )))