ADT. Afraid of it

hbp,
This a great post from a 77 year old vietnam war veteran. I will print it and keep it on my desk.
We all have to overcome fear of cancer treatment as you had to do during the war. Cancer is a war. I am sorry you had to go through this again after Vietnam war. Life is not fair!
Thank you for posting this

There are side effects. Everyone is different. I had tried Orgovyx in July 2022 and had heart POUNDING - written as "palpatations" as "protocols do not allow the word 'palpatations'..." I went to q.o.d. and same number of pills but 6 days later....again, the pounding. Stopped til Feb 14 2023 when told I had to try it to get to 2nd drug and then chemo or clinical trials all of which were off limits unless you do ADT first. So this time started q.o.d. instead of with 3 first day. That was fine for two weeks but when I went to every day---same issues except no pounding and I made it to April 8 2023 or so and the build up of "on edge feelings" and list below PLUS foegetting to take it acouple of times made my doctor stop it. We meet next week to talk.
I had extreme nightmares, not so bad hot flashes, anxiety, brain fog, put things in the wrong place like bowl of instant oatmeal in the cupboard next to the microwave, balance issues, peoples's names and object name loss, felt tight in the face a lot. Some men don't have these and others, and some men have worse.

Wow. That sounds concerning. I have had heart attack history and the cognitive stuff is really worrisome. But I appreciate you sharing.
I’m trying to come to terms with trying to kill the cancer and risk suffering along the way. Quality of life weighs heavy for me.

I’m also very concerned about Mood swings and mental hell.

Update. They will give me a 1 Mo shot of Eligiard and then I go to daily pill for of Orgalvx(?) if my insurance - Medicare covers with my heart history.
Anybody do the Eligaurd ?
I didn’t want the 3 mo shot in case I wanted to stop.
Biopsy May 13. Then the shot. They think I might be now Gleason 8. No longer 7. Due to tumor growth

I had my prostate surgery and during follow up and before radiation in one of the scans I was diagnosed with an unrelated cancer in my right kidney. The would not start radiation until after my kidney surgery which would not take place for 2 months so they put me on Eligiard. It was a night mare, hot flashes, night sweats, mood swings, poor sleep. I also lost control of my body temperature, I was always, always cold. It was the worst several months of my life.
Everyone reacts different but for me it was a living hell

Gleason 7&8 metastasized to a lymph node, tail bone, and pelvis. Been on ADT (Eligard & Zytiga) for 17 months. PSA went to less than .06 within a month of starting. It did exactly what it was supposed to do. Tumors shrunk to almost undetectable followed by SBRT to eliminate them. My prognosis is excellent. ADT is difficult but exercise, an antidepressant for hot flashes, and a positive attitude will get you through it! Far better than the alternative!

Have you experienced them, or are you just worried about them? Everyone's reaction is different, so don't assume the worst (though do be prepared, just in case).

I had occasional weepy moments for the first few months on ADT and Apalutamide (having what I though of then as a "terminal" cancer diagnosis, and being paralysed in a hospital bed from the tumour's spinal-cord compression didn't help matters), but then I got used to it, and even at the start the weepy moments were relatively rare.

I never lost mental sharpness — even lying in the hospital bed, I was able to fix problems on a web site remotely via a terminal emulator on my phone (I couldn't sit up to use a laptop yet) and could solve a sudoku. That said, I do need to rest a bit more these days, and work only half time now (I'm lucky that I had private disability insurance).

Your mileage may vary. ADT may be horrible, or it may be a mild treatment that gives you many more years to enjoy life, as happened for me.

I started ADT in early April. By May I had terrible SE's, more mental than physical--depression unlike any I'd known and suicidal ideation. I also had bad insomnia and tachycardia episodes. I was switched to Orgovyx due to the cardiac issues and now I am doing a lot better. No further cardiac episodes, some sadness but no suicidal thoughts or major depression. Still have insomnia and the new side effect of joint and some nerve pain. Also, my muscles have disappeared even though I work out at the gym multiple times per week. I've lost 35 pounds, almost all of it muscle. At first I was glad because I'd put on 15 pounds during the pandemic but now I'm underweight and almost never hungry. As for ED, I can get a good erection with 100 mg of Viagra but can't have an orgasm. Fortunately, I'm only on this path for six months and I've read Orgovyx clears the system fairly quickly so I can wait another month and see the light at the end of the tunnel.

I was treated for Gleason4+3/7 in May 2023, I had 5 treatments of high dose Proton radiation. Before that I received a total of 3 shots, 2 douses of Eligard, followed by one Firmagon. They sucked, the worst wa the initial doses, in 24 hours, my testosterone was wiped out and I felt like part of me was ripped out. However, other than being tired, most side effects were minimal. The shots are longer lasting than stated. I only received 3 shots, before radiation and now almost 18 months later my levels are slowly coming back up. As someone else stated, it’s a war. Be concerned but ask questions and follow your team’s recommendations. You aren’t alone or the first, we are all part of a brotherhood that none of us wants to belong to, but it is what it is.
My current results are outstanding, I’m feeling better and my recent pas was .21. My doctors are very happy and have been reducing my visits to every 6 months. My oncologist has me seeing his PA, because I’m doing well and frees him to concentrate on the more serious cases. It was a fearful journey but I powered thru. You can do this, be concerned, be informed and go for it. You’ll look back at it and be stronger for it. We’re with and behind you Brother. Your not alone.