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 🌼💗🙂

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

bearcat998 | @bearcat998 | 3 days ago

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

@surftohealth88

Someone correct me if I’m wrong but I think the even with a RALP, some tissue can remain.

Mrs K | @klein505 | 3 days ago

In reply to @bearcat998 "@surftohealth88 Someone correct me if I’m wrong but I think the even with a RALP, some..." + (show)

@bearcat998

I also read that some tissue can be left behind..

Jeff Marchi | @jeffmarc | 3 days ago

In reply to @bearcat998 "@surftohealth88 Someone correct me if I’m wrong but I think the even with a RALP, some..." + (show)

@bearcat998
If you look at the biopsy after the surgery, you want to find out if there were clear margins. If there were Then no tissue should’ve been left behind.

After a prostatectomy Almost everyone has an undetectable PSA. If not, then there is usually a BCR problem.

surftohealth88 | @surftohealth88 | 3 days ago

In reply to @bearcat998 "@surftohealth88 Someone correct me if I’m wrong but I think the even with a RALP, some..." + (show)

@bearcat998 @mrs K

Yes, it can but than usually uPSA stays the same or goes up very, very, very slowly and also tends to go up and down little bit without straight up trajectory.

Some of new research papers state that once uPSA reaches 0.03 BCR is almost warranted in the next couple of years.

johndavis60 | @johndavis60 | 3 days ago

In reply to @surftohealth88 "@johndavis60 Thanks John for stopping by 💗😊 ! I am so glad to hear that your..." + (show)

@surftohealth88

I work from home and I really had no problems working while doing radiation. I did mine everyday (Monday through Friday for a total of 38 sessions) at 2 pm so it wasn’t that disruptive. Also was good to get out of the house for a drive to the UofR. The only side effect I really noticed was occasional loose stool. They played Disney music while I was getting radiated and I appreciated that. Took about 7 minutes on the table every day.
The important part is to drink enough water prior to the appointment or risk being kicked off the table to drink some. I would start drinking water once I left the house and was usually good by the time I arrived (25 minute drive). I did get kicked off the table for not drinking enough 1 time out of 38. Please don’t hesitate to ask any other questions you may have.

I did finish the bridge painting and some others. See attached. My painting sessions really make me feel better and I forget about PCa fo a little while.

surftohealth88 | @surftohealth88 | 3 days ago

In reply to @johndavis60 "@surftohealth88 I work from home and I really had no problems working while doing radiation. I..." + (show)

@johndavis60

AAAWWWWWW 😍💗 - just BEAUTIFUL !!!!

They are all sooo good but the pond one is just to die for 🥰, although I am subjective lol, anything with flowers has magnetic powers over me lol. That is really amazing what you create dear John and I am so glad that you started painting , it would be such a pity not to use that exceptional talent that you have.

Thanks for sharing all the details about RT protocols < 3, and thanks for offering help : ))) - I am sure I will have many more questions.

Thanks for attaching your beautiful artwork - it really brightened my day : ))) !

dhasper | @dhasper | 2 days ago

In reply to @surftohealth88 "@mjp0512 Hey mjp : ), thanks for the info about Medicare and related cost. It is..." + (show)

@surftohealth88 Surf. I am mentally and educationally preparing for my radiologist appt on Thursday. Can you tell me why you selected those two drugs and whether you would expect to begin radiation immediately or have a waiting period.

Chip | @chipe | 2 days ago

Welcome back. This is the same as my situation and I start radiation tomorrow. Have hope!!

surftohealth88 | @surftohealth88 | 2 days ago

In reply to @dhasper "@surftohealth88 Surf. I am mentally and educationally preparing for my radiologist appt on Thursday. Can you..." + (show)

@dhasper
Hi dhasper - I read bunch of papers but those 2 helped me with understanding what is best for high risk patient as my husband:
https://www.nature.com/articles/s41391-023-00712-z
https://pmc.ncbi.nlm.nih.gov/articles/PMC12337907/
There I found out that adding second generation testosterone blocker gives the best results. That means that RT + ADT +ARPI gives the best results.

Than I did some reading about those ARPI medications and looked for side effects and found out that Nubeqa has better profile.

Regarding ADT - Luprone has more side effects than Orgovyx , especially if person has any heart issues.

So, this was how I made a decision but I do not know how will MO and RT evaluate my plan : (((. I really hope that my husband would get Nubeqa since even as monotherapy (meaning used alone ) it works great for prevention of metastatic disease.

We have all appointments lined up this week and I will know much more by the end of this week and will come back with updates - hopefully good ones 🧿🍀🙏

Wishing you great appointment on Thursday and may this second step prove to be a victorious one for us all with BCR ! < 3

surftohealth88 | @surftohealth88 | 23 hours ago

In reply to @dhasper "@surftohealth88 Surf. I am mentally and educationally preparing for my radiologist appt on Thursday. Can you..." + (show)

@dhasper
Hi @dhasper - we had the first app. today with MO - it seems that Nubeqa is still in trails for this particular use (high risk BCR salvage RT + ADT + darolutamide /ARASTEP study (NCT05794906)/ , so it is not yet standard of care. For that reason, Nubeqa is out of picture as possible intensification of a treatment.

Orgovyx was agreed upon (thanks God) - it will be 6 mos or more depending what PSMA shows.

Tomorrow we have app. with surgeon - I will let you know if we discover anything new.

On the bright side, estrogen is now well known and accepted. We asked about it and it is available but of course , everybody is very cautiously optimistic because for example no real data exists about estrogen and salvage RT combo. It will be some time before it becomes available in that context.

All in all - it was nice consult because MO is really kind and nice person, calm and knowledgeable and always gives hope.
BUT, without PSMA the whole plan is just hypothetical at this point, and for that we might need to wait till we at least hit 0.1. He said it might not even happen, but I think he is just too sweet and wanted to prevent me from tearing up 😋.