ORGOYVX

[jptria67]

Has anyone started or completed their regiment of ORGOYVX? I have advanced prostate cancer, had the robotic prostatectomy and am 3 months out from surgery this week. My nadir was 0.39 and now the PSA is rising 0.99. I'm facing hormone therapy ORGOVYX and radiation. I'm young (early 50s) and in good shape (cycle 50-75 miles a week and walk 10-15K steps a day). I'm a bit petrified of the side effects on top of radiation.

[Lyubov]

The fact that you are in such good shape will go a very long way in countering troublesome side-effects! Good luck!

[114411]

I've been taking Orgovyx since April. I'm not in great shape but the side effects seem to be less than lupron. On top of that I had a heart attack in May and had my gallbladder removed three weeks ago. I try my best to exercise but 10000 steps a day are about the best I can do. Overall, I've been on adt since 8/20 and can't wait to finish next July.

[jptria67 in reply to 114411]

Thank you for the reply. What were the most challenging of the side effects so far and do they get better over time?

[London441 in reply to jptria67]

Fatigue and hot flashes. Muscle loss and fat gain. Sometimes elevated blood sugar and blood pressure. Any co morbidities are exacerbated. Also cognitive issues and depression for some.

Not everyone suffers these; I had little difficulty. You’re ‘petrified’ because those who do suffer are the only ones you hear about for the most part.

Metabolism slows, eat less if you can. Added fat comes easily.

You will need to lift weights if you really want to beat the side effects. Your cycling and walking will help, but if you don’t lift weights you will lose significant strength which is the source of the fatigue.

And I do mean significant.

Youth is on your side, but only if you put it to best use!

[TeleGuy in reply to London441]

Ditto on the weights. I cycle a lot too but weights are what you need to counter the ADT side effects, and you'll find that it changes your mood. You should have no major changes after six months if that's all you have to do. Re: suicidal tendencies mentioned below, hopefully you can let your cancer dx help you focus on living live well.

[joeguy in reply to 114411]

Do you feel that Orgovyx brought on the heart attack? I had a lot or heart related issues from adt with eligard, firmagon, and xtandi a couple years ago

[Tall_Allen]

You will only be taking it for about 6 months. You are probably reading about side effects in those of lifelong ADT - it is different.

[DP46]

Hello! I’ve just completed my first month of ORGOVYX after taking LUPRON for 12 months. So far can’t tell any difference between the two but it’s early. My side effects: ZERO sex drive, hot flashes, fatigue. Hot flashes and fatigue very manageable though once you get used to it. Best advice I received was to “keep moving”. I have. I’ve gained no weight after 13 months and no breast tissue. I bench press twice a week til I can’t move anymore ha. 11 more months til freedom from it for me. (hopefully long term freedom) Im 55, always very active, stage 4. RARLP then radiation/hormone therapy after discovered cancer in one regional lymph node. God bless you!

[ragnar2020]

Hello,

I’m curious why you are beginning ADT and SRT so soon after completion of you RARP? Have you had any genetic testing? What about delaying the SRT and ADT treatments until you can get a PSMA-PET scan?

Many men are finding that their treatment plan after BCR has changed after getting a PSMA-PET scan that possibly identifies mets before any other form of imaging and possibly discovers what could be driving the rise of your PSA. This is a time of big changes in PCa care following BCR.

I’d suggest you look into the benefits of using pencil beam (PB) proton beam therapy (PBT) for your SRT and possibly tE2 for ADT. Both of these forms of treatment have less cardiac SEs. Just my opinion that I expect will be attacked from numerous proponents of their favor means of treatment.

Good luck,

Jeff

[jptria67 in reply to ragnar2020]

Thanks, Jeff. Good questions. Before my surgery (July) I had to fly to Istanbul to get a PET PSMA scan. After surgery with a nadir of 0.39 rising to 0.99 my PET PSMA was denied. I'm doing an MRI this week and then hopefully they will give me the PET. I would rather do proton therapy than spray and pray.

I don't really want to do either radiation or hormone therapy because of the potential permanent damage so this is why I'm trying to gather as much info as I can.

[Horse12888]

There is no reason to think the SEs of Orgovyx are going to any different that any other ADT drug. And as TallAllen said, it's 6 months. Even if the SEs hit you hard, anyone can tolerate 6 months. And the beauty of Orgovyx is very quick T recovery. Don't sweat it.

[jptria67 in reply to Horse12888]

Why are some people saying 6 months and others 18 months?

[Horse12888 in reply to jptria67]

I said 6 months only because Tall_Allen did.

Regardless of the duration, Orgovyx is a godsend because you can quit if the SEs are unbearable and feel good again in just a few weeks.

[MateoBeach]

ADT helps the radiation work better. Doe not allow radiation damaged cancer cells to recover. They don’t die immediately but only when they go to divide. So the Orgovix is a powerful helpful tool on your regimen. Yes it sucks but you will be done with this before you know it.

[jptria67]

There have been studies that show suicide rates for advanced prostate cancer patients on hormone therapy (specifically the injection like Lupron) are as high as 20%. What are any of you doing to combat depression and suicidal tendencies?

[London441 in reply to jptria67]

Loving family helps, friends help, work and or hobbies you enjoy helps, hydration and good diet help.

What helps most?

WEIGHT BEARING EXERCISE and plenty of it. Sorry to be yelling, but on Lupron etc it is essentially the best single thing you can do. If you already do, do more.

You can bet those suicidal 20% are rarely athletes. Yet we don’t have to be athletes to chase the ‘ADT blues’ away.

Studies have shown that the difference between the lowest levels of strength and fitness and simply average is a MUCH larger difference than average to above average, above average to high, or high to elite.

Like so many things, the smallest increments of improvement are at the top. This should inspire anyone who is out of shape.

And when on ADT, we should all just pretend we are.

[jptria67 in reply to London441]

Super helpful, London. I'm not an elite athlete but I'm disciplined. I get the impact to the libido (which is not easy to accept) but the rest of it, I want to 'carry on' as well as I can.

[CAMPSOUPS in reply to jptria67]

Can't stress enough what has been said. It's only 6 months of ADT. It's a nothing burger.

IMHO about the time the side effects some of us lifer's complain about become bothersome then boom you will be off it (ADT).

Unfortunate you are DX'd with PC. Fortunate you can have an aggressive short term treatment vs. a lifelong treatment.

You have a cancer DX. This is not like previously in life where in contemplating treating migraine headaches for example you can choose or not choose drugs based on side effects you read about on the internet.

[Horse12888 in reply to jptria67]

This stat isn't right. ADT increases the suicide rate from some very low number by 20%, which is still a very low number.

Having said this, ADT DOES cause depression, and that needs to be taken seriously. I really didn't want to be alive, but I'd never kill myself because of what it would do to my loved ones. Antidepressants helped a lot.

[Shorter in reply to jptria67]

Please don't assume the worst. Nothing in my life can compare to what robotic surgery did to me. I would say that my suicide risk went up much more than 20% because of a complication I received from prostate surgery. It was life changing! ADT and radiation were a bump in the road compared to that. We are all different and react differently to treatments. I had to get another surgery early this year in a big city to fix what was done to me during prostate removal and get my life back.

[blakejr]

I have been on Orgovix for 6 weeks. I have had surgery and radiation. When I started on the Org my PSA was 7.105. Yesterday I had my first PSA since beginning the Org. It was 0.020. It appears to be working for me at least right now. I have hot flashes every day and so far the fatigue has been mild. My triglycerides have gone from 66 to 226. Those have been my side effects so far..

[blakejr]

After 6 weeks on Orgovix my testosterone is <10 and PSA went from 7.105 to 0.020. I was also terrified of the side effects, but they have been less than expected after 6 weeks..

[JRPnSD]

I recommend Orgovyx, much easier than injections and no hormone flare, and less cardiac impairment. Start a program of resistance training ASAP...to maintain yourself. Start it now! 6 months is easy! I just completed a year of ADT...and another to go. Wishing you all the best.

[jptria67]

Thank you, JRPnSD. My PSA was over 100 to start so I doubt it will be six months but I can always hope. PET PSMA scan is next to determine approach. Weights, bands, walking and biking. 10K steps, 10 miles at least 3-5 days a week. I feel good but haven't started any treatment yet. Best to you as well.