PSMA scan report is in : (((

@jeffmarc
Hi Jeff, nice to see you in this thread 😃 ! Do you have any thoughts about all of this jumble of new ideas about ADT and treatment options appearing in PC world all of the sudden ?

When is your surgery ? 🙂🍀 I hope that all is as planned : ))) and that very soon you will be able to travel with no inconvenience of wearing pads.

@surftohealth88 You’re in that headspace where none of us should ever be: trying to keep pace - and understand! - all the nuances involved in treatment.
I finally had to let it go myself, trust my RO and put myself in his hands…a very difficult step for us control freaks! Never considered myself one, but the evidence is overwhelming🤔.
The RO experienced in neuroendocrine PCa sounds like the IDEAL doctor for your husband. He knows the enemy all too well!
Don’t get sucked in by the Dr Kwon acolytes - this is not the time for theoretical or ‘wishful thinking’ type of treatment. It’s the time to go all in and worry about the SE’s later - of which there will be few if hubby follows the damn protocols to the letter. Best,
Phil

I had a radical prostatectomy in 2022 and the pathology showed the tumor was 40 percent of the prostate, Gleason 7 3,4 30 percent 4, cribform, EPE with 2 margins questionable, Pt3a. Went two years with PSA <.02 and then rose to .15 after a year. They did a decipher test and it was .92.
They took a psma test and had 3 locations on the ribs with low suv. They then put me on Orgovyx for three months and took another scan and the ribs had approximately the same suv therefore they felt it was not cancerous since the low testosterone would cause the cancer to have no psma and would have lowered the suv. This is something you could have done, go on adt for three months and see if the suv stays the same or goes down. They also tried to biopsy a rib which showed nothing but told me showing nothing did not mean it was not cancerous since it is hard to make sure it was taken in the exact spot.
I am getting IMRT radiation for BCR and they are doing the larger area being the lymph nodes and prostate bed for the first 25 radiation sessions and then 13 additional sessions to the prostate bed area. I have completed the 25 sessions of the larger area and 4 sessions of the smaller area and will complete the radiation and 6 months of Orgovyx on June 18.
The radiation has caused bowel issues and some sensitivity to penal area but no more than expected because they had warned me.
The Orgovyx has been more of issue to me. It emotionally has affected me and has changed myself. It causes me brain fog, hot flashes,tired, makes me feel weak. There is no question that doing things physical things makes me feel better. I am on several other drugs which could be cotributing and the radiation also definitely contributes to the tiredness. I am very satisfied where I am at and am looking forward on June 18 to start the process back.
I am not a Dr but if I was in your husbands situation I would ask if I could be put on Orgovyx and take another psma after 3 months and do they feel this would be a good method. Both my Dr and Sloane agreed this was a way to do it. Also I would be asking if the radiation they intend to give him was going to cover the lymph nodes which I expect it is. If the specific lymph nodes show up cancerous they may be able to target it specifically Wishing you and your husband the best.
Also wishing the prostate cancer could be eradicated for everyone. While a slow cancer it sure can be persistent
Timmy

@surftohealth88
The desire to have people get off ADT sooner does seem to have some really significant medical reasoning.

The thing is, it is really only applicable to those with low-grade prostate cancer. Those with Gleason nine or Even lower Gleason scores with aggressive cancer are still getting the 18 months to 24 months recommendation. I have yet to see recommendations to reduce the amount of ADT when the case is aggressive.

I know in my case with eight years on it and 31 months undetectable It would seem that I shouldn’t still be on it. When you bring BRCA2 into the picture, and the fact that I tried reducing Zytiga and it immediately resulted in a big rise in PSA, my oncologist doesn’t think I should get off of it. If I had any of the side effects other people do, I probably wouldn’t be on it, But it doesn’t really cause me any fatigue or other major issues so I continue on. It does start to worry me about the fact it may cause heart issues, since I was in the emergency room getting cardioverted a week and a half ago. I still have lots of skipped beats, much of the day. But that didn’t make any difference when I had surgery and they put me under. The anesthesiologist came to me before having the surgery and he was commenting about issues that could happen if I had an afib event while being operated on. I told him “I won’t have one” and he jokingly said, “you promise?”

@pamperme

Hi Timmy - thanks soooo much for sharing this 🙏💗 ! It is brilliant idea !
I really hope that our doctor will be open to that suggestion. It would be so important to know what is really going on with that inguinal node : (((

I am so sorry to hear that Orgovyx had such bad effect on your body and mood : (((, it is unbelievable how side effects differ from patient to patient in all aspects of PC care and treatments, there is just no way one can prepare or anticipate anything related to PC *sigh. I can only imagine how eager you are to stop ADT and finally get back to "normal self". Just one more week - you are almost there !!! *hugsssss

Once again, thank you for finding time to write such detailed post and for sharing your experience, it is greatly appreciated and extremely helpful.

I am wishing you super fast recovery and forever remission form PC 🍀✨.
Hopefully science will soon find the way to obliterate this obnoxious disease once and for all.

Jeff, I hope the surgery worked and your heart is doing what it should be doing--or at least is as close to that as possible. And thanks all for the information on the various drugs and approaches. I do have some heart issues as well, so Nubeqa could be in my future.
I may be in the same headspace that Phil described of trying to keep up with everything and all the nuances and realizing it is VERY challenging. At some level, I too, am relying on the fact that I have very good doctors and I will follow their advice.

Sending you a big hug! Have you heard back from UCLA? We feel we have received very competent care from them. We started at UCLA in Westwood for the prostatectomy but are now working with a UCLA oncologist here in San Luis Obispo County where we live. Just had another PSA, it has now been .04 for six months on Orgovyx and Nubequa. He had seven nodes removed during the surgery, three were cancerous. We had hoped that removal did the trick but no…more nodes showed up later on PSMA scan that weren’t there before the prostatectomy. It truly is like herding cats, no rest for the weary. I know how you feel. Take care! Sending positive vibes to both of you.

@heavyphil

Trust - well it has nothing to do with control, trust has to be earned. ; )

So far every single step that was suggested and taken proved to be wrong, so tough luck trusting in our case. Actually, if I trusted doctors I would have lost my husband two times by now for 2 different medical conditions. The first one was dismissed as “heartburn” and the other as “viral infection” and if did not take my husband to ER the first time around with correct suspicion that he is having cardiac event and the second time me taking him to ENT specialist and insisting on biopsy, he would have been possibly dead by now TWICE (god forbid).

Anyway, just the fact that we have no idea if the groin node is cancer or not makes having a correct “plan” and approach basically impossible on a get go.

But one can not jump out of one's skin, what will be will be, I am just trying to make sure that I did everything possible to find him the best care and know that I did all that I could have done and everything that was possible to do.

How will things turn out to be at the and is out of my “control”, that is for sure … *sigh 😔

PS: Thanks Phil for reassuring me about neuroendocrine RO - yes, that is the only saving grace in all of this and the very thing that I am now "holding onto". That and the fact that this young RO of ours did not have big ego and sought opinion of his colleague.

@ucla2025

Thank you Ucla for your comforting words and for hugs 🥰, means a lot !
We finally got hold of UCLA RO office ( the same one that you mentioned in your early posts) and sent all of the records and details to them are now waiting for them to call us back to make app. for consultations.

It all takes so much time to organize and actually happen, that yes, no wonder "cats" roam free and jump around at will *sigh. Insanity all around and I do not have to tell you how it goes since you had to deal with all of this and in very similar way yourself. : ((

I am sooooo happy to hear that your husband has this beast under total control with ADT and Nubeqa , what a relief 🍀😃 ! May one day we both celebrate total victory over PC !!!

Sending you and your husband bushels of healing vibes and hugs <3 : ))))

@jeffmarc
Thanks Jeff for sharing your thoughts about ADT 💗 and sharing your experience with different medications over long time-span - it is very comforting to know that medications can work for many year, although with some worrisome side effects but we just need to persevere (like you ) and take adequate steps to mitigate whatever appears as obstacle on our way.

I admire greatly not only your continuous help and vast shared knowledge here but also your stamina, strength and will to fight this beast and any other challenge heads on 💪, no prisoners taken !!! I am loosing oomph and I hate that about myself now ...

I hope that you are still pain free : )) and I am sure that recovery for you will be super fast 🍀 : ))) ! When will you have device activation ? : ))) I am sending you best wishes for 100% incontinence control 🍀✨ in very near future.