ADT. Afraid of it

Love the "chemo cut." 🙂

When I was stuck in a hospital bed for a while, I just asked my spouse to put the no. 3 attachment on our hair clippers and do my whole head with it. I felt so much better lying on a pillow all day after that, and it was much easier to keep clean during basin baths.

When it grew back on ADT, it came in fine and whispy instead of thick and straight, so I had a new look as a bonus.

Imagine my older brother is having laugh as he went bald very young and I had / will have again great hair!

Great to read comments on this important topic. I'll add a slightly different perspective. I'm 72, was 4+3U with risk factors and completed 4 months of Orgovyx on 23rd January. Now, still, I have persistent symptoms and my Testosterone has not returned fully to normal. I still have hot flashes, ED and I'm 10 lbs. heavier, all belly fat. I'm really annoyed about it, but, thankfully, I don't tend to get depressed and believe "it's better to be pissed off than pissed on" (in moderation). In my most recent contact to my RO asking why it's taking so long, I got the 'you're old' reply and he said, "let's wait a couple more months' before we start adding T back." I commented , "OK, I'll pray not to have a stroke or heart attack in the meantime and don't want to change diet and exercise at this time, although my diet/drinking are healthy and I exercise daily." Note that when I started ADT, I heavily dieted and exercised, ran a couple 5Ks, which helped a lot at the time.

Before taking the drug, I researched it for many months and talked to several doctors and others to conclude it was necessary. I decided that it was necessary and that I did not have a good choice. Lately, for most all challenging situations, I've been trying to practice 'keep your expectations low' and hope to be pleasantly surprised. N.B. I started doing this (low expectation thing) more often after hearing about a speech by the nVidia CEO to the Stanford graduation class. He's clearly been successful using perserveance to overcome life's obstacles.

I'd make the same decision today to take Orgovyx; I'd plan for it to not to go so well; I'd be annoyed when I didn't get the results that I hoped for and thrilled when I did. While my expectations might be low, my hopes are very high and I continue to work towards full recovery or better....Best Wishes!

@seasuite Re: Your post on Aug 15, 2024 about taking Orgovyx. I am encouraged by your words. (I am on my second day with this ADT.)

Thank you Sir! I do have hope and am excited about the progress. I hope others on this support group see past the possible negatives and have a vision for the future. My hair started falling out 2 weeks ago and called my hairstylist (who is a family friend) and told her with a laugh it was time for the "chemo cut" and went right over, no time to mourn such a minor loss.
I had a scary second chemo infusion Tuesday, became VERY flushed, high heart rate and almost passed out but the team was amazing! Pushed Benadryl and Prilosec and within 5-10 minutes was almost normal and was able to finish the infusion. My biggest fear was actually having to stop chemo, like you @northoftheborder I'm all in!
After seeing a very close friend die a horrible death from pancreatic cancer within 2 years of diagnosis 10 years ago I'm thankful for the hope I can have that he never could.

I'm 66 and 2 months into a 6 month trial on ADT - Lupron Depot. The biggest issues i've had are occassional headaches, hot flashes (they suck), feeling weaker but I'm trying to offset that with working out, and the most troubling side effect for me is how much my testicles have shrunk. But since I'm only on this trial for 6 months I'm hoping that eventually my T levels will recover close to normal.

I haven't had any depression issues but I'm the kind of person that either pushes that down or I tell myself "stop being such a pu$$y" and I grind through the occassional down feeling. So far i havent felt "down" very much and i do try to surround myself with family and friends and keep myself occupied - the times i do get the occassional "down" feeling is when I'm alone and i try to avoid that.

For me, ADT is not as bad as some of the materials I read but it's def not optimal and you can expect some side effects. If, at some point, they tell me i have to go on ADT for YEARS, thats going to be a tough decision but if its between dying and having no T I'll prob choose no T.

Getting old isnt for the weak and one of my fav quotes from a Zach Bryan song is "In life having the upper hand's a myth, your only fighting chance is too stubborn to quit." I live by that credo - be too STUBBORN to quit, say F U to cancer, and power through it! You can do it !!!!

My update:
- Lead RO said it would be safe for me to take Testosterone supplements and referred to urologist.
- Started T Gel and daily 5mg Cialis about a month ago, along with some heavy duty blood testing and monitoring quarterly (additional to current 2 ROs doing PSA/T monitoring).
- Symptom changes: Strength/Energy: noticeable improvement; Hot Flashes; slightly fewer; ED; noticeable improvement; Belly Fat: lost 4 lbs.
- Planning to refocus on lipids and A1C, conditions prior to PCa, to get those lowered.

Best wishes!!!

In reference to seasuite:
If you are on this Mayo Clinic chat, I assume you have prostate cancer. Typically, you would be highly advised to avoid testosterone boosting drugs at ALL cost. Testosterone is the primary food source for prostate cancer. You will note, most of the drugs taken for various stages of this disease are to eliminate as much testosterone as possible, including the need for a radical orchiectomy. My urologist had me on Androgel while my PSA was rising several years ago. It was like splashing gasoline on a smoldering fire. That fire became an inferno, which I'm now still dealing with today with a specialized cancer oncologist. Get another medical opinion.

I understand your concern about testosterone and this was the prevailing opinion several years ago. But, thinking regarding TRT and prostate cancer is changing.

I was diagnosed with G9 prostate cancer in 2021 at age 68. Had RP with subsequent development of oligo metastatic disease treated with SBRT, triple therapy and whole pelvic radiation. I was on Lupron for only a year. My PSA became undetectable after second chemo/taxotere cycle and has remained so for >2 years. My T never rebounded after discontinuing the Lupron. I had the usual side effects related to low T.

Around 5 months ago my MO said he wanted to put me on TRT under the guidance of an endocrinologist. My MO is very experienced and has been treating prostate cancer for decades. He is at Johns Hopkins and is the Director of the Brady Urologic Prostate Cancer Research Center. He has published >500 articles on various topics related to prostate cancer. I trust his judgement completely.

Taking TRT is an individual decision between the patient and their physician. There are pros and cons, like everything in life. Medical decisions are about weighing risk vs reward. But to say patients with a history of prostate cancer (even metastatic) should never be put on TRT is incorrect.