Testosterone: Is everyone's level in the low numbers?

I went down to 3 testestosterone while on ADT meds.

I continued to work out, run, bicycle and walk during that time. It's a matter of pushing through it like you say. Just think about the next thing you are going to do, not all the things you are going to do. In mil training they call that just getting through the next evolution of training, don't worry about what's coming down the line. It's kind of a mindset. "I'm going to feel tired if I do it or not, so, might as well"

If you are a walker by habit, maybe take some extra walks in the park when available, good for the body and the brain! My best advice is just don't let the fatigue slow you down. I don't think it's likely that folks in this group started running marathons when they went into treatment, they were likely doing that when they were diagnosed, (although there are some pretty amazing folk in here), and didn't let the treatment take over.

Having said all that, I also mitigated it with naps in the afternoon. My work is somewhat concentrated so I work a lot of 12-14 days, but, get more days off than the average worker. On my days off, it was go go go, then take an hour nap in the afternoon 🙂

I also changed my diet somewhat to eat "lighter" and lower portions, this helped my keep the extra ADT weight off, still gained a little, but not too bad. Marathons? No thanks, it didn't work out too well for the first guy that did one! LOL

I'm sorry to hear that. Yes, the fatigue is rough, and it takes time to adjust to a new normal.

Given the treatments you listed, am I correct in guessing that you have many bone metastases (rather than just 1 or 2)? And are the meds succeeding in keeping your PSA low (castrate-sensitive)?

Those monthly Firmagon shots are a pain. Ask your doctor about getting Orgovyx, has the same effect, but it’s a pill you take once a day. If you can’t get that then a three month or six month Lupron or Eligard shot is a much easier solution. I did that for six years, no need to get shots in my stomach every month.

Some people have had bad reactions to Fermagon shots after a while.

Exercise is one of the main things that helps with the fatigue issue. Try to make sure you do at least 5000 steps a day. I find it a 20 minute nap once a day is more than enough, the longer you nap the harder it is to wake up clear headed.

I have difficulty reading and understanding the dr. notes but it says, extensive and wide spread in the bones. My psa has been holding at ,02 for quite a while. And while the fatigue is rough, not as bad as the pain before treatment was. Best to all

I'll second that. 2½ years of Firmagon shots in my abdomen was a nasty experience: three days of flu-like symptoms after every shot, and rashes and swelling at each injection site for weeks.

Orgovyx has made a huge difference for me. Firmagon and Orgovyx cost the same in Canada — about US $230/month — but Health Canada just approved Orgovyx earlier this year, so it's not in the Ontario Formulary yet.

My previous radiation oncologist got me into Pfizer's patient-access programme as soon as Orgovyx was approved here, but if I weren't I'd pay for it myself, since the difference is so big. YMMV.

I feel better to stick with what is working. Last visit Oncologist offered me to go on 3 month treatment of the Firmagon, I didn't want to. I go once a month to get blood work and see him so is no big deal. The last few months the shot hasn't been as uncomfortable. And after I asked, he said I won't be stopping treatment any time soon. Best to all.

I'll add that Orgovyx also makes planning trips and other special events easier, since I don't have to schedule around the three sick days every month.

North,, I understand we are all different, but could you give me dosage for the Orgovyx you take, I want to check for pricing. thank you

I understand that — if it ain't broke, why try to fix it? Please don't take anything I write as pressure to change; I'm just sharing my own experience for everyone reading this, in case it's helpful for someone.

In my case, I was comfortable going from Firmagon to Orgovyx because they're both GnRH receptor antagonists, and I knew that I responded well to them, so switching to the same thing in pill form didn't feel like a big risk. I would have been much more nervous changing to a different class of ADT (and probably wouldn't), just like I wouldn't switch from Erleada (Apalutamide) to a different kind of ARSI as long as it's working for me.

It happens I have it with me here in the coffee shop, because I just refilled my prescription:

30x Orgovix 120 mg
Take one tablet by mouth once daily

(I have to refill every month.)

It's probably much more expensive in the U.S. (as is Firmagon), so 🤞 that your insurance covers it if you decide to go that route.