Is this normal on ADT? Body hair gone

You have to get on that treadmill and go. Walk fast or run if you can. It is frustrating because my doctors no matter how tired you are push through and exercise. So, I have been doing that and it is very hard. But, I do feel better. My weight is going up and down. You do not want Diabetes or other co-mobilities. If you already have these issues - exercise is essential. It is hard. I work 12 to 13 hour days and at the end of the day getting on a treadmill is the last thing I want to do. I want to lay down and rest. It is hard, but we have to try.

In my case, I found it was important to keep moving, but not to push. If I pushed too hard with exercise (especially early on), I'd be in bed for a week.

For me, consistency matters more than intensity: I tried to get in the habit of exercising every day, even if I couldn't manage more than a short morning walk sometimes on a low-energy day.

*Definitely* don't get into the exercise-as-punishment mindset, because your body's already taking a beating from the cancer; think of moderate exercise as self-care instead.

This is excellent advice. I walk my dog 3-5 miles every day at a moderate pace but not so fast I get winded. My heart rate goes to about 100-110. I bike ride several days a week but had to buy padded underwear and wear padded shorts to do it. I love doing both these things. I force myself to lift weights 3 days a week but don't really like it. I do yoga once a week--it's harder than it looks but I like the people in the class so I get in some socializing as well.

I was on Orgovyx and Erleada for 6 months last year. My cancer had metastasized to a lymph node in my chest,I had some similar side effects and more, muscle loss, bone density loss, hot flashes, shrunken testicles, increase in breast size, loss of body hair and pretty bad joint pain. By month four on the drugs I wanted to stop. I felt like I was living thru a Twilight Zone episode and was becoming an involuntary transsexual. But I stuck it out for the full six months because it was part of a clinical trial. Because I was on two drugs I really don't know which one gave me what side effects. Once I stopped it took about 6 month to feel normal again. My body hair came back fuller and darker.
My PSA continued to go up rapidly once stopping the drugs. And I knew that they would be putting back on some sort of ADT as my PSA continued to rise. I advocated for myself to get treatments to prevent further ADT induced breast growth (three rounds of radiation). The Radiation Oncologist that did the preventative radiation said it was common practice back in the day when the only option for advanced PC was actual castration, He also mentioned that the reason that my left breast was larger than the right one was because the right one had been radiated when they were radiating the lymph node tumor in chest.
I have been back on Orgovyx for 6 weeks now and this time coupled with Extandi. So far hot flashes mostly at night or if I am working outside in the heat. I am beginning to feel the loss of muscle strength, and some minor joint pain as well. My apartment is above my antiques shop ( I live in a 140 year old General Store building) it is 21 steps up or down. I decided to expand the little studio apartment on the 1st floor while I was off the drugs and feeling better. If things got as bad as they were on the last treatments I have the option to live down there for awhile. Part of me is still in disbelief that I agreed to chemical castration again after knowing how it affected me the first time...
I am 65 years old and four years into treatment. I had RRP, followed by 34 rounds of salvage radiation, that followed by the clinical trial (Orgovyx,Erleada, & radiation to the tumor in my chest). My Oncologist says that I have had 3 failed curative attempts and my cancer is considered incurable. As a single gay man with no children and little family I need to decide how much more treatments I will agree to. I feel so much better when I am not on any treatments. Right now the math isn't working for me; 6 months of treatment with all the nasty side effects and 6 months to feel normal again for a couple months, then back on the drugs that make me feel like shit. The treatments are hell on my body and wont cure me. I need to decide if living a few months longer and feeling like crap is worth the pain...

Time to evaluate the value of living.

Treatments may not cure you but I am in the same condition, can’t be cured, but still alive with no cancer pain after 14 years, now 76 Had prostatectomy, then salvage radiation.

I have been on ADT since 03/2017 and along with Zytiga 4 years later and Darolutamide 2.5 years after that my cancer is undetectable for the last 10 months. It will come back, but there are treatments I can take when that happens.

Yes ADT isn’t fun, I get hot flashes and brain fog and muscle weakness/deterioration, but I exercise every day and do weight training three times a week and it keeps me going.

You can look into getting your metastasis zapped with SBRT if they come back. I did that.

If I stop with my drugs, my PSA rises right away, maybe the same for you. You can get accustomed to the drugs, it’s never perfect, but with exercise it can feel a lot less draining. Going on and off the drugs can make you live a lot shorter because they are not as effective when you stop and start.

Don’t give up.

I've made the same decision not to try pausing ADT.

The last research I read about suggested that ADT "vacations" are safe for earlier stages of PCa (and might even improve overall survival slightly), but resulted in lower overall survival for advanced PCa like mine.

Since ADT and ARSI have been keeping my PSA undetectable for three years so far — with manageable side effects — I'm not willing to risk taking a "vacation" and maybe seeing my cancer come back as castrate-resistant after a few months. It would be like poking a sleeping bear with a stick. 🙂

It's still early days, though. New research and evidence might. change my mind in the future.

A warning. At the latest PCRI conference, they announced that they have found that being on one of the lutamides (Enzalutamide, apalutamide, Darolutamide) for four years can cause small cell neuroendocrine cancer. a cancer that is pretty much untreatable and leads to death within a year or less.

I don’t recall if Zytiga was included in this. I will find out.

It’s not guaranteed, but it’s a danger to be aware of.

Checked with my friend who went to the PCRI conference and sure enough taking Zytiga for more than four years also causes neuroendocrine cancer, which is pretty much not treatable yet.

Thanks for that info. Do you have a link to the study?

I'll mention it to my RO on Monday, but even before seeing the study I'm guessing it's far too early to talk about causation; it probably detected a small-but-statistically significant correlation that would need to be investigated further. I'd also have to know the type(s) of PCa where they found the apparent correlation (advanced or early? non-metastatic, oligometastatic, or high-load metastatic? etc).

The only relevant study I could find with my own web search was one about using Apalutamide to *treat* neuroendocrine cancer successfully, which shows how tricky it can be drawing conclusions from isolated studies.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11157388/

The first time I said it was possible to get neuroendocrine cancer. The second time I didn’t say possible it is not a definite thing

The two people I know that recently have had neuroendocrine cancer were not offered apalutamide, it was not a treatment. Continued platinum chemo was one treatment, but not real successful.

There are 2 studies going on which have some promise. One guy I know is trying to get into a study but his health is poor. The other study is only treating women right now, with breast cancer.

The other guy I know died.