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PSMA scan report is in : (((
Ok .... First I want to say that PSMA obviously works at very low PSA, at lest worked for us at 0.14. Tracer used was F-18.
There are 4 nodes with mild uptake in pelvic area and one in the groin area (inguinal) which they think is possibly not PC and will be checked by biopsy or incision. My husband will ask for it to be removed and examined since it is on the surface, and he likes "things removed"in general. Other nodes are 3 iliac and one mesorectal.
So yeah 😔, I wish there was "nothing" but at least we know where the cancer is and it can be targeted. RO thinks that this does not change initial plan but it will be intensified , more Gys to nodes and he will talk to MO regarding ADT. Possibly now a year of ADT with addition of Nubeqa. So far my husband has zero SA from Orgovyx, but only 7 days passed since he started it, so we will see.
Warning to new patients :
1) - INSIST on node sampling during RP (we did but we were ignored) , so I do not know - maybe tell that you will raise the hell if they do not sample nodes (???). I am so angry, I can not even describe the state of me at this moment. We asked numerous times for nodes to be dissected since one was faintly glowing, my husband asked for that even right before he was wheeled in for surgery - and surgeon did not do it "since nodes looked normal" - somebody just sho*t me already !!!! 🤬
2) DO NOT WAIT for uPSA to go to over 0.2 - things will bee seen on PSMA even with mild uptake ! The earlier you start with sRT , the better.
Hugssss to alllll 🤗 and hoping that you are all having much better day.
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@surftohealth88
Mrs. Surf--thanks as always for your encouragement and support--you really are amazing! And good luck sorting out the nodes issue-it seems really complicated.
I got my first tattoos! My kids are so proud of me :))
The drug thing got a bit crazy, but I will skip the details.
The bottom line is bicalutamide was the easiest drug to get me on right away--which I really wanted (actually wanted weeks ago.) It is basically just so I could start SOMETHING until my 6/16 appointment with my MO. I expect she will recommend Orgvyx and an ARPI for 2 years. I am afraid she may recommend Abiraterone since that was the drug added to ADT in the STAMPEDE trial that showed benefit over ADT alone Why do you think it is so bad?I wonder if I should be pushing for Nubeqa too????
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1 Reaction@bikeman1
You have to take prednisone while on abiraterone (zytiga) . I always wondered why so I checked and abiraterone shuts down your adrenal glands. One more complication! The -amides, like darolutamide ( nubequa) don’t do that. And I think it might cause more heart issues - Mrs Surf can tell you more.
That said, several people on this forum have benefited from abiraterone - everyone responds differently.
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4 Reactions@bikeman1
I am happy to explain : ))) - it is VERY effective drug !
It additionally suppresses testosterone levels by blocking enzymes that are used in testosterone production in testicles, adrenal glands and even in tumor cells (yes, even they eventually learn how to make testosterone when there is a lack of it - just horror ).
But, unfortunately abiraterone has many side effects and some are mitigated by adding prednisone which has a slew of it's own side effects *sigh : (((. It is an older drug that now comes as generic and is very affordable unlike new generation of drugs that block testosterone receptors on cell surface. Now, even those have side effects and out of all of them the newest one is named Nubeqa (darolutamide) and it has the lowest amount of SA but is extremely expensive here in the USA , I mean, astronomical prices ! Without insurance it is about $12,000 to $18,000 for 30 day supply !!! Abiraterone is $100 to $250 without insurance so that is the reason why Abi is prescribed - not because it is the best at present time but because it is the cheapest.
You can Google side effects of Abiraterone +predinsone , SA are numerous and very dangerous like heart fibrillation, possible permanent adrenal gland shutdown, onset of diabetes , extreme tiredness, and so on : (. Since you have heart issue and Nubeqa is approved for use for cases like yours since 2025 - you should demand it. You have very caring and knowledgeable cardiologist and he will make the case for you and I am sure that your insurance will be obliged to cover Nubeqa 💗.
Abiretarone is used the most (the most often prescribed) for reasons I already addressed and many, many patients use it without much trouble but some have a LOT of trouble and if one can get Nubeqa, it is a better choice. We will try to get it , but it always depends of a doctor - how reasonable or unreasonable he/she is and if he wishes to fight for the patient (argue with insurance) or not. At the end, one can refuse to take it 🤷♀️, we are really hoping that we will be able to avoid Abiraterone if at all possible.
Since you have known heart problem I think that there is absolutely no reason for them NOT to prescribe it for you. 🌺 I am sure that you will get it - just be outspoken and demand it. 👍 Most doctors count on us being meek and ignorant, unfortunately.
PS: Ha ha for tattoos : ))), and so nice that your kids are so supportive <3, that means a lot, I know.
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4 Reactions@surftohealth88 Jeez! How many combos are out there? PSMA directed ‘sounds’ really high tech and specific; leads one to believe that it is the best treatment…hmmm..
Six of one/half dozen of the other: if it comes back yet again, they can target those areas which have not been treated with SRT, since the lifetime dose would not be maxed out there….not sure if I trust that level of specificity and can assume no overlap with previously treated areas. - I’m with you: blast it ALL to freakin hell and go from there.
Your husband’s case IS aggressive; why are they tiptoeing around? KILL IT already!!
Phil
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6 Reactions@surftohealth88
"RT can involve the whole region and all nodes and extra boost to "glow worms" but it can also be a newer approach with "PSMA directed" treatment - treating only what glows and keeping Gys in a bank, so to speak, for "tertiary events" . "
The Dr kwon approach? Is this gaining traction then?
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1 Reaction@surftohealth88 Bayer the maker of Nubecqa has a program which provides the drug free of charge. Ask your doctor about it.
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4 Reactions@bikeman1 I want to repeat what I have posted several times elsewhere--my husband took Zytiga with prednisone with no substantial side effects. It kept his cancer suppressed for over three years. Please do not refuse it simply because others have had negative side effects. It might be worth trying it in order to keep the other options available for future treatment. If the side effects are intolerable, he can always change oral meds to something else to try.
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1 Reaction@klein505
To be more specific, abiraterone Stops the production of cortisol. Without it, you get extreme fatigue. Prednisone restores the cortisol that is lost. For some people 5 mg doesn’t work and they need 10 mg. After you stop abiraterone Your body does not usually produce cortisol immediately. It can take a month or two or three of tapering off before your Cortisol returns completely. I thought mine would return in one month, In the afternoon, I would have extreme fatigue and have to sleep for a while. One month wasn’t enough For me and for most people.
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6 Reactions@klein505 @heavyphil
Oh yes dear Mrs. K and Phil 😔, "lets confuse PC patients with some more new ideas" lol. Lets now shorten ADT time which was for years pushed as necessary for extended period of time followed by warning of imminent demise if not followed and lets also now consider doing boutique zapping of only "glowing staff" since we do not wish to spend all RT power in one sweep , while for years alllll papers and research explicitly instructed that full pelvic floor with all nodes should be zapped even if NOTHING glows.
I guess in following 10 years there will be a new suggestion that we should do NOTHING since OS is the same for all no matter what. Just chill and sip some hemp oil and hope for the big meteor taking you out before PC does : (((.
BUT, this was urologist talking and Dr. K. is also urologist and that might be the connection. I know that RO will faint if I mention this approach ( and I will not) since he already made a plan for all pelvic floor and all nodes and in coordination with another RO who works with neuroendocrine patients (the most vulnerable group) and who knows what "high risk patient" is. *sigh
I mean, I can see why treating only nodes sounds attractive - it uses less Gys and also there is almost zero chance of SA (like proctitis and cystitis or blood count disorders) AND it might be all that was needed actually for long remission or even "cure" ( not my idea !!!), but , BUT ! I do not know - my head will explode soon, honestly. I have pain in my left shoulder and I told my family that under no circumstance they should try to revive me if I get a heart attack 😠 !
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4 Reactions@crowman
Thanks so much for this information 💗 ! I had no idea that it is possible. THANK YOU !