Testosterone- confused

I used orgovyx. It was the RO's drug of choice. The conventional wisdom seems to be a) it's more even as you suggest since you take it every day. b) It's not a shot, so less painful and c) the belief is that you recover from the side effects more quickly. I really don't know about the 3rd one.

I would've have thought the thing to do, depending on other medical history, would be ADT for a few months then a targeted radiation to that tumor. (others likely will have more info)

I think getting a straight answer is tough because there are a lot of other variables, such as insurance coverage. If I recall the Orgovyx was about $80 per pill in the US, I was lucky and it was all covered but not everyone is in that situation. Maybe Lupron is covered and Orgovyx isn't etc.. Without getting too far up on my soapbox, unfortunately, a lot of docs here in the US seem to answer questions based on things like that instead of what is medically best for us.

There also may be something in your medical history that makes one better than the other.
Best of Luck to you!

I'm now 73, took only 4 months of Orgovyx but that was plenty to mess up my system seemingly forever with the 4 main symptoms: Hot flashes, ED, weak/tired and belly fat. My pre-ADT T was 467, post-ADT 32, then 12. All my Drs., from two major institutions, had said that after one year, if my T doesn't recover to the normal range they'd consider adding some. In Jan. 2025, I was still at 152 and started talking to a couple fertility urologists. Around March, after consulting at least 5 ROs and urologists, I started daily 5 mg. cialis and T Gel, Testosterone 1.62% Gel, 2 pumps per day. He also added a lot more test, like lipids, into my quarterly monitoring. In April, my T rose to 427 with Free T at 44. All the major symptoms immediately improved, however, I still had a few hot flashes. In my last consult with the fertility urologist, I asked about getting off the drugs and he said that it's unclear how the symptoms would return. I found when I stopped T Gel, I got a quick return of all symptoms, some with vengeance. So, I decided to try one pump per day and that seems to be better, but I won't know my actual T reading for another 2 months. Hopefully, my body can do the job on it's own and my PSA stays very low.

Yes, I agree on the money rabbit hole. This is why we as cancer victims need to do all the research we can. There is so much out there. Don’t know what is real and what is not. I thank you for your honesty. Keep up the good fight

Testosterone is a primary nutrient for prostate cancer. I'm 73 and have had almost no testosterone for a decade as a result of various drugs and a radical orchiectomy fighting prostate cancer. I still remain extremely active, get my 8-9 hours sleep each day and push through any fatigue. 9 years ago, I was on Androgel to boost testosterone, which ended up accelerating my initial problem by pushing testosterone levels even higher. The DUMBEST advice I ever received. Now, it's a decade later, I'm still here to talk about it. Perhaps a little more tired, but my grandkids still have a grandfather who can still beat them on the tennis court.
Be informed, make good decisions and good luck.

Hi 13Roadrunner,
I was on lupron + abiraterone and prednisone for 24 months and had proton therapy for gleason 9 with cribform. My PCP had me start rosuvastatin upon diagnosis to help prevent CV issues from treatment. My experience with ADT at age 68 wasn't all that bad. I had all of the symptoms you read about, but did a minimum of 30 minutes of vigorous aerobic exercise and 30 minutes of resistance training 3 times a week and followed a largely plant based diet including 1g of protien/kg of body weight. I was able to continue to work part time, mountain bike, hike, kayak and xc ski with friends, although I was not as fast/strong as I was before treatment or as fast/strong as I am now a year after treatment.

Regarding the 3 month lupron shot in the hip, it wasn't painful and the cost was covered by Medicare. I understand that there is potentially a short term surge if T prior it dropping which doesn't happen with orgovyx. Following treatment, T recovery is evidently much faster from orgovyx. Orgovyx, on many medicare supplement plans, will cost you the full $2,000 Part D copay each year. From reading about orgovyx side-effects, it sounds like they are very similar to lupron, but might have lower cardiovascular risk. If my recurrance happened today, I would probably go with the orgovyx because it drops the testosterone faster, has a lower risk of cardiovascular side effects and T levels return to normal more quickly. However, I'm not thrilled about the price, having to decide to take the pill that is causing the side effects each day and I wonder if the devil I know might be better than the devil I don't know...

I wish you luck on a your decision. In your case, I'm not sure that either one is the wrong choice.
Bill

I just started on Orgovyx about 6 weeks ago and the side effects have varied, I have some hot flashes, tired, some headaches, overall not good but tolerable, not too terrible. I tried to start on generic Abiraterone (1000 mg made by Novadoz) at the beginning but after two days I was not able to tolerate both. Had high blood pressure, confusion. So doctor was ok with stopping Abiraterone.

I think I made a mistake in taking the first day loading dose of Orgovyx very close or at same time with 1000 mg of Abiraterone. Seemed toxic for me and maybe would have been a little better had I spaced them out more. I still probably would not have tolerated both right away.

About a week ago I saw the medical oncologist and he said to try adding Abiraterone back in, starting at 250 mg, will see him next week and we will try to up to 500 mg and then eventually try to get to 1000 mg. But even at 250 mg, no food near dose as directed, I feel like my fatigue, headaches are significantly worse. So I am not sure I will make it to 1000 mg.

I know it can be different for everyone but what do you think about, anyone with experience on Orgovyx and Abiraterone? Or can Nueqa with Orgovyx help with long term prognosis but with less side effects? Or something else? My PSA dropped from 29 to 6.3 after only 10 days or Orgovyx.

I am 63 in pretty good condition otherwise. My biopsy was Gleason 8 (4+4) on 2 of 12 samples, Gleason 7 on 2 others (3 + 4 on one, 4 + 3 on other). One of the Gleason 8 was 9 mm with likely perineural, lymphovascular, cribiform pattern 4 identified. The other Gleason 8 was 3 mm without all the other stuff but Gleason 8. My Presacral lymph node was positive on psma-pet Vmax 20, and a very small amount also lit up for perirectal node. My Decipher was .86. A decipher was not initially recommended for me but I asked for it to help get a better idea of things and they allowed it. Am at Scripps in San Diego area.

They are planning 25 VMAT, 3 SBRT starting in late June but have also considered RARP and radiation. It is recommended that I stay on ADT for 2 years.

Can I add something else other than Aberaterone that would help long term like the Aberaterone is said to? Or are there any choices instead of ADT at all?

Thanks!,

Phil

I'm still in my early 60s but my experience is similar to yours. Three months after stopping Orgovyx my T went up into normal range but three months after that it dropped well below low normal and I started getting bad side effects again. I was told if it continues to drop they will supplement. We'll see.

Thank you
I don't have any grand kids yet I hope to be alive when they arive 🙂 Yes i was on a testostron boster and I feel the same way abought as do you (follish) I wish you all the best