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.