ADT fatigue- How bad can it get for some men?
I started Firmagon 4 months ago, and am just beginning radiation this week. Localized 4+3, PSA at diagnosis was 28, now down to 0.66. Testosterone is <10.
All I want to do is lay down on the floor and crawl into fetal position, I am so fatigued. I can microwave a dinner, or do dishes, but in 10 minutes I want to go back to bed. I'm 73, was reasonably energetic (not a jock, though)... but i do have a history of bad depression fatigue in past.
The oncologist has checked everything blood and thyroid-wise, no real red flags.
Can the low T cause fatigue this severe? If I only do a year of Firmagon might I have a reasonable hope of energy in the future? Cause I can hang in there if this is the price of healing.... but it should would help to hear a "yep, been there, done that" from somebody.
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I’m four months into ADT; Orgovyx. First of 48 IMRT sessions is today. Increased the exercise intensity and duration when I started ADT, and will try to maintain or increase that level as I move forward. I haven’t had any problems with fatigue thus far but don’t know how the ADT and RT combination will change that.
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1 ReactionI was on Firmagon for 2½ years before switching to Orgovyx. They're both GnRH antagonists — so they work the same way — but I found Orgovyx (daily pills) MUCH easier to tolerate than Firmagon (monthly injections).
For me, the problem with Firmagon was the acute symptoms around each monthly injection: swelling at the injection site, 2–3 days of flu-like symptoms (fatigue, muscle ache, borderline fever, etc), and then a gradual recovery before we repeated the whole cycle.
Those vanished when Orgovyx became available in Canada in early 2024. I'd say that switching from Firmagon to Orgovyx was the biggest single quality-of-life improvement I made since my diagnosis in 2021.
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2 Reactions@rbtsch1951 I like your positive attitude. And you can hope for the quicker recovery of testosterone that Orgovyx is known for. You have crested the hill and on the downslope toward recovery now. Perhaps discuss with your doctor the addition of some daily pain medication.
@northoftheborder Yea, the day of injection was a breeze for me. But days two through about five were quite painful at injection site. I now have what I call Firmagon Belley. Doesn’t seem to reduce much or get tighter like I was before, no matter what exercise regimen I use. I have loss of libido still. During the time I got monthly injections I had these small skin bumps, like the stuff was trying to get out of me. Doc wanted me to continue on longer, but I pulled the plug on it after 5 doses. So I have effectively missed four doses, but my psa and testosterone are still at undetectable levels.
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1 Reaction@rbtsch1951
I am so sorry to hear that : (((, Can you try and ask your doctor to prescribe Orgovyx for you ?
As you can see some members had great improvement in pain and fatigue when they switched to this drug. I really hope that it is possible for you to get this medication ... If you can not afford it there are some programs that help with that part too- let us know. I remember that some members here mentioned that fact.
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2 Reactions@forresterra49
Yes, I am wondering about that part too. My husband will start RT in about 10 days : ((
Wishing you fast and easy RT treatment and 100% success in cancer eradication 🍀✨ : )))
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1 Reaction@surftohealth88 Thanks for your thoughts, but I am on Orgovyx. I WILL make it to the end of the prescribed regimen in spite of the worsened musculoskeletal complains and fatigue.
@surftohealth88 I understand why insurers balk at Orgovyx in the U.S., where it costs many thousands of $$ per month, but it's stranger that oncologists don't prescribe it more in Canada.
Here, Orgovyx costs the equivalent of US $215/month, exactly the same as Firmagon, and since the government is usually the insurer, they actually *save* money with Orgovyx because they don't also have to pay for a visit to an infusion centre or doctor's office for the monthly injection.
My best guess is that awareness of Orgovyx is still low outside of the major regional cancer centres and teaching hospitals. And of course, injections are more reliable for patients with early dementia, who might forget to take a pill every day.
I think fatigue varies greatly. My husband has a very hard time with fatigue and is on Orgovyx & Abireterone.
Some days we can get in a great workout, others he’s completely exhausted. Some days a long walk - others days a short one. And yes, some days he just can’t and he needs a full rest day. He used to exercise hard every day before our cancer journey started so it’s difficult for him.
If you have had depression fatigue previously I’d discuss it with your doctor. Battling cancer takes a lot out of you, physically and emotionally.
Wishing you all the best
@northoftheborder while you are correct that Orgovyx costs several thousand per month in the US, all of us on Medicare (65+) have a cap on out of pocket RXs of $2100 in 2026 if our advantage plan or Part D prescription plan covers the drug. That's not the case with younger patients. So even if I didn't have any other RX costs (I do) 12 months of Orgovyx would only cost $175/mo. if I chose to spread the costs out over 12 months. My Orgovyx cost for the remainder of the year is $0, as I have reached the $2100 threshold.
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