Stopping Orgovyx after six months

[gsun]

My brother has PCa as well. We keep it in the family... He had a PT ten years ago but his PSA rose so he got salvage radiation and went on Orgovyx. His MO said he would be on it for 18 months, as is SOC. He didn't like his MO so he switched to a GU MO. That MO said the research showed six months of ADT was enough. Has anybody heard of this? I haven't.

[Cape1]

the number I hear most often is 18 months, IFF you have knocked your PSA way down during that time. I took mine from 125 down to .002 ( basicly zero) over 3-4 months and MO let me take a holiday after ten months. He called me “an exceptional responder”.

So far my holiday going well, after four months

my testosterone bounced back in 4-5 weeks to about 500. A PSMA scan last week showed nothing bad in the prostate nd only one bone hotspot, whereas I started with 3-4.

Note that I didn’t just take their Darolutemide and Relogolix, but also did most of the Jane McLelland meds nd supplements, plus HITT high level cardio exercise,sauna, mostly veg diet, no sugar or alcohol.

Now, I’m going to take it up a notch to try and knock out the remaining hotspot holistically, rather than the radiation that RO wants. I just put myself on the 6/18 food/ fasting pattern, plus Keto low carbs.

[85745 in reply to Cape1]

You and I both. right now taking same adt pharma drugs and eating veggies, fasting etc . so far in 3 mo psa went from 254 down to 6.6. Blood work again next month .

[Cape1 in reply to 85745]

That’s good progress by you. However, to clarify, note that I am no longer taking the ADT drugs. Have been off them now for about four months.

[85745 in reply to Cape1]

Can you go off adt once it's down and still maintain low psa ? I think I was told I would be on it till it stop working .

[Cape1 in reply to 85745]

By definition, stopping ADT means your testosterone AND your PSA will rise. The question is how much

I’m 69 and as a Relogolux/Darilutinde user, my testosterone came right back mmm y PSA is at 3.7 which is not a concern, yet , but obviously will be if it keeps going

I have a friend who is 77, and does HIIT, fasting, great diet, most of the Jane McLelland protocol who came off LUPRON a year ago his testosterone stick at 75, but the good news is that his PSA remains at .002

This is chess in 1000 dimensions

Close your eyes and do SOC…or step outside the lines, based on a ton of reading

The choice is yours

[85745 in reply to Cape1]

I get it lot of moving parts, I'm 68 Sept will be 69. This is chess in 1000 dimensions indeed.

[Tall_Allen]

The duration of adjuvant ADT with salvage radiation is controversial:

prostatecancer.news/2023/02...

[Tall_Allen in reply to Tall_Allen]

I just got this today. It says 24 months is better than 6 months:

sciencedirect.com/science/a...

[Justfor_ in reply to Tall_Allen]

The reference time was from randomization. This means that the short-course group had a period of 9.5 years to develop metastasis post completion of the ADT, vs 8 years of the long-course. If we assume a linear distribution with time, the 10-year metastasis-free survival post ADT completion becomes 75x9.5/10=71.3% for the short-course, against 81x8/10=64.8% for the long course. Hence, 6 months better than 24 months! It looks very suspicious to me that they didn't publish the data for the third arm, that of NO ADT at all. WHY?

I found it:

"detect an absolute increase in MFS of 6%, from 80% in the No-HT group to 86% (HR=0.67) in STHT"

zenodo.org/records/6586525

Under the same logic, the 80% of the NO-ADT group remains unaltered, vs the 86x9.5/10=81.7% of the short-course ADT.

In practical terms, insignificant a difference.

[Tall_Allen in reply to Justfor_]

I'm sure T recovery is not linear.

[street-air in reply to Justfor_]

thats really interesting. Of course the long course group had more time to mets on average because they had the two years where no mets were really possible! whereas the short course group recovered T and starting feeding whatever cancer is there, earlier.

also look at it from a side effect perspective. To get that small reduction in 10 years reached with no mets (or to delay inevitable mets past 10 years) the people had to give up 2 years on ADT — and their best two years, not their worst (older age) years. Plus many more would lose T recovery, so suffer all that. And that loss of T after ADT could easily power the observed delay in mets appearing.

Faced with that data on average, I would rather do 6 month adt, then recover T, then much later when older if mets appear, do ADT again. The end result is you live your best years left with minimal side effects and still make it to 10 years with more ADT in reserve. right?

In other words, extending ADT is not shown to be more curative by this study, it just shuffles the deckchairs around over a decade of time.

[gsun in reply to Tall_Allen]

Reading that seems inconclusive. It says, basically, 24 months is better than 6. But you are on ADT longer, so the cancer is in check for longer. So if you were on it 36 months, you should have an even better outcome. 48, etc. Also, your T does not recover as fast the longer you are on it.

[Tall_Allen in reply to gsun]

For 3 years, both groups have low and equal met free survival. After 3 years, both groups probably had return of baseline T, but the advantage of the longer duration continues while the short-duration group deteriorates quickly.

[gsun in reply to Tall_Allen]

This is for radiation right after RP. I am talking about salvage radiation when PSA rises after ten years post RP.

[ADTMan in reply to Tall_Allen]

From the study: "16 people need to be treated with long-course ADT for one of them to avoid an metastasis-free survival event within 10 years." That is about a 6% improvement. Keep in mind that overall survival was the same. Having gone through 24 months of ADT, the last 6 months of which was horrible, I probably would not have done it. I asked to stop at 18 months but my radiation oncologist said no.

[maley2711 in reply to ADTMan]

You, the customer/patient, didn't have the final word...just refusing more shots?

[vintage42 in reply to ADTMan]

"... 24 months of ADT, the last 6 months of which was horrible..."

What happened after the first 18 months to make it horrible? Maybe it's what happens with Lupron. I am 6 months into oral Orgovyx with no unpleasant side effects and expect to go on until I become castrate resistant.

[Cape1 in reply to vintage42]

Your choice, but often in life “ less is more. “Also, it is wise to consider SIDE EFFECTS, which are many and real. Brain fog,heart issues, Bone loss ( this was huge for me) , inability to build muscle in the weight room , and loss of libido.

Entire books have been written on how important testosterone is to the human body, in ways we barely understand

There is a lot to be said about QOL ( quality of life) In my world of Results Based mindset, when we get the results we wanted, I stop the treatment with so many life threatening side effects.

Always ready to go back on, when/ if needed

also, everyone glosses over this fact, “cancer cells are in every human, BUT a healthy immune system cuts them off at the knees

Focus on revving your immune system through HITT, diet and fasting and good things happen

[vintage42 in reply to Cape1]

"... Bone loss ( this was huge for me) , inability to build muscle..."

OK, I am afraid of those, and at my 6 months on Orgovyx it's too soon for them to show up much. Did you take a bone agent like Prolia, and if so, did you start at the beginning of ADT or after a scan showed loss?

[Cape1 in reply to vintage42]

I did not take Prolia and never will. Ever heard of Jaw Necrosis?

Taking another drug, to maybe fix the problems created by the first drug seems like a fools errand

Many men in this chat are at a late stage , whereby their body can not do the HIIT and weight room work .for them a daisy chain of drugs and procedures is what awaits

Fortunately, I’m not one of them and will focus on things I can control always seeking to rev my immune system

[vintage42 in reply to Cape1]

Most people do not get the necrosis. So you avoided Prolia and took the bone loss from ADT for 18 months?

My oncologist wanted me to start Prolia when I started ADT, but I declined because of its side effects. I did get a baseline DEXA scan, and if the next annual test shows bone loss, as it likely will, I will have to use Prolia. Maybe it is a mistake to wait until after osteopenia has occurred, and I might change my mind. Like many I am not good at HIT and am on the daisy chain route.

[ADTMan in reply to vintage42]

I was OK for a year. After that I started noticing myself getting tired, losing endurance, lacking drive and interest in things. Then after 15 months the psychological effects started. I prefer not to get into the specifics. Its convenient to think it was due to ADT but who knows. Getting up multiple times a night, lack of sleep, low energy, gaining weight, increased blood sugar, age. My advice, exercise as much as possible and don't watch tv.

[Tall_Allen in reply to ADTMan]

I agree with the authors that it is a small benefit, and probably if the men in the trial had been screened with PSMA PET (about ¼ had PSA>0.5) and more had received radiation to pelvic lymph nodes as well as the prostate bed (This was before the SPPORT RCT), there might have been no difference at all.

OTOH, I object to their choice of endpoint. They used metastasis-free survival as a surrogate for overall survival (no one would pay attention to 10-yr overall survival). Most men going through salvage radiation want to be cured, so biochemical recurrence-free survival is a better endpoint.

[gsun]

thats really interesting. Of course the long course group had more time to mets on average because they had the two years where no mets were really possible! whereas the short course group recovered T and starting feeding whatever cancer is there, earlier.

Exactly.

[mababa]

An interesting thread you’ve started here, Gsun. Comments have touched on many of the questions I have re ADT. Excepting my PCa with Mets to nearby LNs, I’m an otherwise healthy, soon-to-be 72-year old. I started Orgovyx in Feb this year anticipating RT in June. It got delayed until Aug because of a Barrigel procedure delay. After two mos, PSA dropped from 16.8 to 1.45–so it’s working. SEs are tolerable so far, but I despair thinking I could be on a steady diet of this stuff for years to come. Hence, I’m also planning to take holidays from ADT post RT, partly to avoid becoming castrastion resistant. My RO is not fully supportive because this violates SOC. I haven’t decided on anything definitive yet, but I’m thinking in terms of 6 mos on, 18 mos off. One thing for sure, I’m taking a holiday after RT just so I can discover whether it has worked. Seems PSA should remain static or continue to fall post treatment.

[chefjlu]

I had an RP 5 1/2 years ago, went nearly 3 years with no needed treatment, slight up in PSA led to a PET Scan. Salvage radiation on 1 spot found and start of ADT - 2 years. I will be ending Abiraterone tomorrow,, marking 2 years. In a long consultation with my MO and with Prostate Cancer specialists at 2 Cancer centers 2 years was pointed out to be the best time frame. In a little over 2 years I will be having follow up with MO, and schedule of monitoring blood tests will be set up. I originally tried Orgovyx (ineffective after 4 weeks), 1 month of Firmagon, then onto 6-month shots of Lupron. Last one was in November last year. Stay positive, stay active, adjust your diet and follow your blood test results.

[j-o-h-n]

Give our regards to your brother....

Good Luck, Good Health and Good Humor.

j-o-h-n

[gsun in reply to j-o-h-n]

👍👍