Just a quick update for those Brothers on, or considering ADT with, Orgovyx.
Today I started the second month of my 6 month sentence. As of today I have had virtually no side effects. I purposely lost 8 pounds prior to going on it, and today the scale says I am down another pound. Just back from the gym and I am doing the same reps, sets and weights that I was doing prior to Orgovyx..
Finished SBRT 5 last Thursday and other than some minor bowel urgency I have no side effects from that either.
If anyone has questions about Orgovyx or SBRT fire away.
I am 68, one 4+3 and one 3+3 core. PSMA PET shows confined to prostate, Decipher was .84. Grade Group 3, intermediate unfavorable.
Stay Strong Brothers!
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ToolBeltZia
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i was on 2 months of ADT prior to SBRT. 1st month was lupron, 2nd month i switched to orgovyx because it was supposed to "unload" faster.
i had no SEs for first month. hit the gym and weights frequently. 2nd month i lost 8-10 lbs of muscle. got thinner, and less toned. T count almost to zero. no hot flashes or any other issues. still sexually capable but in truth my libido went down. very fortunate to only have 2 month "sentence"
the drug did unload quickly. T count it high 400s six months later.
developed peyronies disease, for which there is some research to suggest that ADT and SRBT can cause some vascular injury to some patients (limited few, i got lucky)
I finished my first month of Orgovyx and the 3 to 4 night hot flashes are manageable. Just realized I have picked up three lbs of weight and that I don't have to shave as often as before LOL. Every day work outs helps with side effects from the drug and radiation. I am surprised by the weight gain and can't work out more so I need to focus on the diet.
Good for you Murk! I agree the workouts are critical for well being and recovery. And you are correct with the diet. I eat a lot of fruit and have changed what I eat based on sugar content. Also I have taken to reading labels and I have cut back a lot of "added sugar". Also have taken to snacking on yummy (not exactly) rice cakes. As with any weight regiment exercise is important, but dietary intake is at least as important.
Was on 4 months orgo and now it has been 8 months off orgo and still have not recovered Testosterone (baseline 286)... I believe over 60 years of age , a significant % do not recover to their baseline T and will need TRT for rest of their lives. Please have this discussion with your oncologist before getting further into orgovyx . If I knew this , I would not have taken the orgo for the extra 8% or so survival benefit.
My 20 imrt was enough..psa .1...orgo (big mistake for me)..good luck..
Do not mean to burst your bubble or rain on your parade. I was hoping the same thing.
Baseline T was 784 at 78. I was on Lupron for a total of 6 months. The needle has not moved upward. Going to have a discussion with my MO and RO next week about this.
My main concern with the low T is really stamina. I am in great shape. Kind of a gym rat and do aerobics. I have noticed a decrease in capability in both areas. I weigh what I did in college playing sports so weight is not the issue.
We are also going to go over recent blood work with both the RO and MO to see if there is some radiation residual effects causing the stamina issue. Blood count issues?
How long have you been off Lupron? I have read it can take at least as long as you were on it for your T to return. Orgovyx is supposed to have a much quicker T return.
Please let us know how you are doing and what the Docs determine.
I understand it may take some time to recover. I am off it for 4 months. At my age it may never return. Need to discuss pro/cons of adding back some T to get back to some reasonable level or it maybe I am still experiencing some side effect of the radiation which is causing the stamina issue. I will know latter this week what’s up. PSA at <.10 now.
Just started Nubeqa and Orgovyx on 3/12. So far tolerable Hot flashes in the wee hours of the morning and a bit of brain fog. But other than that, I’m feeling good. We’ll see where this adventure goes from here in about a month when my next round of bloodwork happens.
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My experience with Orgovyx / Relugolix
Progress update - one month after surgery
Switch from Lupron/abi to Orgovyx/abi?
