opinions and experience? time of day taking Relugolix (Orgovyx)

skl8r

Hi y'all. I had a heckuva time deciding on treatment, having had several options. I settled on ADT, HDR brachy and photon radiation. If I recall correctly I'll get 65 gray total radiation.

and I'll start with ADT - Orgovyx for 6 weeks before radiation starts.

I was advised to take the pills any time of day I choose, but be consistent. I understand that! Also advised that patients' preferred times of day are all over the clock dial. The meds nurse suggested that some like to take it at bedtime to sleep through the hot flashes, but I have to wonder if I can do that… Of course that depends on my reaction to the pills.

I have just received the meds and ready to start, I'd love to hear experiences and opinions about when you take the Orgovyx. Pros and cons anyone?

Thanks

Stage 2a, Gleeson 4+4, PSA 4.2 (one core each 4+4, 4+3, 3+4), no genetics yet

swl1956

Sounds like you have a plan. I choose 40 sessions of IMRT and ADT after the Pca showed up in my lymph nodes. I've been taking 120mg Orgovyx and 1000 mg Zytiga and 5mg Prednisone daily for a few months now. The Zytiga needs to be taken on an empty stomach and you shouldn't eat for at least an hour after. My alarm goes off around 5:30am when I take the Zytiga. I go back to bed for at least an hour then get up and shower and have breakfast. Then around 10:30ish I take the Orgovyx and Prednisone. I was taking the Orgovyx for a while before the Zytiga. The Orgovyx didn't affect me much at all, but after taking the Zytiga for a while the side effects of fatigue, hot flashes, mental fog and nocturia are quite annoying. That said, the treatments are keeping my PSA at undetectable. 😀 I think you'll be fine taking the Orgovyx anytime as long as you're relatively consistent. Hot flashes at night can wake you up too. Between hot flashes and having to pee every 2 hours, I believe the sleep deprivation is the cause of my fatigue and mental fog. I'm curious how many sessions will you be having of the radiation. Are you having photon or did you mean Proton?

Old Salt

The doc’s advice makes sense but the nurse’s does not. Your testosterone (T) is supposed to go way down and stay there. Side effects are due to the low T and vary a lot among patients. Try to stay active even when you don’t feel like it.

skl8r

https://csn.cancer.org/discussion/comment/1723362#Comment_1723362

thanks… I am going to have photon, not proton external therapy. Proton is available to me, but I'm sticking to the well proven. It's much better than it used to be, my targeting and planning is being done in the proton clinic (that was quite confusing to me ;)

good to hear that orgovyx side effects were nominal. I think I've decided to take the pill after my MWF workout around lunchtime, so the previous dose will be wearing off during my workout. incidentally, I lift weights/strength training - without me having told them thatm, all my Drs have said that's the best thing to do to ward off side effects of ADT.

swl1956

https://csn.cancer.org/discussion/comment/1723375#Comment_1723375

I too had a very difficult time making a decision. I took a less chosen path of Focal ablation which was successful in the prostate gland, but 6 months later I had metastasis to the pelvic lymph nodes. Then I had 40 sessions of IMRT (Intensity Modulated Radiation Therapy) which is one type of photon radiation. There are other types but IMRT is likely the most common. Do you know which you will be having? Most men typically have around 25 treatments. I was recommended the 40 because it was safer when radiating the entire pelvis to address my lymph nodes. There is SBRT which is done much shorter sessions, but it does have a higher risk factor of side effects due to the higher gray scale of radiation. It was a bit of a drag going daily. My challenge was keeping my bladder full without pissing myself. Other than that it's a cakewalk. I agree wholeheartedly that working out and exercising is helpful. I'm doing daily calisthenics and brisk 3 mile walks. Keep up the routine.

skl8r

FWIW, my plan is

1. ADT with Orgulyx - for however long, tbd
2. HDR brachy boost, 15 Gy
3. eBRT for 5 weeks, fractionated 50 Gy - that's 2 Gy per day

I'm about 7 weeks in with the ADT, and boy - last week - the hot flashes and deep fatigue really set in. I had some unusual fatigue and hints of hot flashes from about week 4 onward. but now, WHEW! I teall, ya, sometimes I'm just sittin there doing nothing consequential and BAM break out in a sweat. I always sympathized with ladies but had no idea.

I sure hope that will be the extent of my ADT symptoms!

Next week I'll get the HDR brachytherapy. a week later I'll have planning for eBRT and start that radiation therapy another week past that…

wish me luck.

Old Salt

3 years of ADT was commonly prescribed for high-risk patients. But a 2018 paper reporting the outcome of a Phase III trial showed that 18 months was OK for such patients. Because you are not exactly 'high-risk' your oncologist may even recommend 12 months.

Duration of Androgen Deprivation Therapy in High-risk Prostate Cancer: A Randomized Phase III Trial - PubMed

Exercise can be very helpful during ADT but it will require a good deal of willpower to actually do it.

PS: I do hope that the 'double' radiation therapy (+ADT) will get rid of your cancer once and for all.

swl1956

I empathize with your ADT side effects. 😕 They can be quite annoying. Not meaning to alarm you, but in addition to the ADT side effects I experienced some urinary and bowel issues after IMRT. They have improved somewhat, but are still present four months after RT. On the upside, I started with a stage 4a metastatic PC spread to pelvic lymph nodes which after treatments has reduced my PSA to .04 down from 9. Anyhow, hopefully you won't experience too much of side effects from your treatments, but even if you do they likely will abate over time. Good luck to you in the coming weeks and please keep us posted on your journey.

Steve1961

i just saw the post and i am wondering you would want to go through what you’re going through instead of just not remove the prostate Forgive me, but it did not state your age so maybe you’re older hopefully but if you’re still young, I’d say 65 or younger why not remove it. I was 58 had 8.0 psa and I have to ask you this question did you send biopsy sent out for decipher testing? You had better make sure that that cancer is not cribbiform.. I did radiation and the Breaky therapy booster and my gkeason was 3+47 over three PSA went down to 0.8 started ti climb back up and biopsy showed that the gkeason four was still there and now they’re telling me that cribbiform is radiation resistant. I would put the brakes on if I was you if you did not have it sent out for testing you better make sure that the cancer is not crib form because if it is telling you from experience the radiation and hormone therapy you’ll be doing for nothing. I wish to God I had mine removed, the dirst time before radiation but I was so scared of surgery. I chose the radiation even thiugh having a bad feeling in my gut and that feeling was right thank God the cancer was still prostate so I had salvage surgery done and it was very successful and I thank God just a little advice. I hope it’s not too late and I wish you the best.