Anyone take a Treatment Holiday? Intermittent use of ADT (hormone Tx)

Interesting. I did NO radiation, surgery or chemo; just a year of Orgo. (localized PC grade 2b); and PSA dropped from 17 to .1 ... however side effect compelled me to take a 'holiday' and quit for 2 months. PSA went from almost nothing to 3.0 .. and free T from almost nothing to 250 (it was 400 before initial treatment). I'm back on Orgo.; unsure if I should be; but might stop again with or w/o doctor's approval, if the side effects get bad again... especially heart fluttering.. will repeat PSA and PET Scan in 3 months.. sound like a plan?

I am not a doctor . It depends on your age, physical condition etc. But based on what you said, 1 year Orgo or any lupron on its own may be not enough to do the job. However, do not despair. You can get back on treatment. Try doing a triplet this time, and make sure.
Dont forget, there is always some cancer cells in our body. We always manage to deal with it. But with aging, the T cell declines, so some cancer cells escape.
Also the kidneys make a small amount of hormones.
All these mean that things may not be as bad as the PSA number indicate.
The long and short is you need to work with you medical team a little more closely. You need to trust them.
Hope that helps.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

The Orgovyx vice surgery, radiation or chemotherapy is mono vice doublet or triplet therapy. Mono therapy is no longer the standard of care, the other two are when you read through the NCCN guidelines.

The CV side affects you describe are why I have a cardiologist on my team. In December 2021 I developed Afib, well, actually a few months earlier. Had to do a cardio conversion when it wouldn't stop, we tried different medications, none of which brought it under control, breakthrough incidents while riding my bike...finally in September 22 had the cardio ablation done, problem solved.

You don't say if you exercise, it can mitigate the side affects of ADT. I exercise pretty much daily, ride my bike, swim, lift weights, pickleball, vacations are generally active ones.

Our treatment decisions are personal, based on our preferences and tolerances, quality versus quantity of life. Mine is an aggressive cancer, I lean towards quantity while managing and mitigating quality. I've looked behind "Door #3, death by PCa," no thank you.

ADT by itself does not "kill" or "cure" prostate cancer. Other treatments, radiation, chemotherapy...do. You can live a long life on ADT, then again, you may become resistant though more and more treatment options exist today for that, more are in the medial research pipeline. It may be possible, expect for the unlucky 27K or so each year who die of PCa, to live with PCa as a chronic disease and die of something else, thinks diseases such as AIDS, Diabetes (a good friend of mine died several years ago, he was diagnosed with diabetes in his early 20s, lived 40+ years with it before succumbing to its affects on his system.

The fact that your PSA went from undetectable to 3.0 in such a short time may be a troubling clinical data point, PSADT, indicting a very aggressive PCa.

So, you ask, "sound like a plan"...my answer, yes. It may not be your best plan given what you describe. I certainly was not thrilled about triplet therapy but the clinical data supported my decision and brought 4-1/2 years off treatment. This go around, I initially discussed SBRT and six months on Orgovyx but my medical team showed me the data that pointed towards 12 months, I agreed. Even on triplet therapy, I went skiing in Colorado, exercised most days, did the Bataan March with my sister in White Sands, NM, rode the Garmon Unbound 50 with my daughter...

In January 2024 it will be 10 years since my diagnosis. The words of my urologist reviewing the TRUS biopsy with me still ring in my ears..."Kevin, that's a pretty aggressive prostate cancer...!"

Kevin

I'm a curious guy, and usually eager to push boundaries, buck authority, and experiment in life — it still gets me into trouble sometimes even in my late 50s.

With my prostate cancer, though, I'm going strictly by the book. I make an effort to inform myself, I ask my medical teams lots of questions, I carry information back and forth among specialists (not everything ends up in my chart), and I take an active role in decision-making, but I'd never experiment on myself by stopping or changing treatment on my own without consulting my med team and working out a plan together. The stakes are too high for me. YMMV.

May be we should not be too hard on the medical advise at initial diagnosis. At that stage, no one knows how the patient will respond to the treatment. Some doctors are better equipped because of their experience, doing the right blood work etc who can be more reassuring. But it is still a battle.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

I was diagnosed in August 21’, had RP in September 21’. My Gleason was 8 and my stage was Pt3b. The cancer had escaped the prostate capsule but was still local. My pre-surgery PSA was 23, 60 days post surgery it was 7. I see a urology oncologist in Mexico City. He put me on intermittent Bicalutamide. I basically take it daily in doses of between 50 and 150 milligrams for usually 3 months. When my PSA drops below 0.7 I stop, usually for two months. After my 60 day vacation, it’s usually about 3. My Dr thinks I can go on indefinitely this way until I die of something else. I’m 61, so that could be a while. I’ve recently started feeling like this may be too passive of an approach. My last PSMA scan showed there was still no metastasis. So I have made appointments with two Radiology Oncologists, Dr Hamstra at Baylor in Houston and Dr Fagundes at the Miami Cancer Institute. My thinking is that if the cancer is still localized in the prostate bed, maybe they could zap it in a curative treatment (wishful thinking?). I’ll see what they have to say.

(Another layperson here.) That's a great point @wellness100 , but I also understand the anxiety — a doctor will have the opportunity to learn from a mistake and do better next time, but their patient might not.

That's one reason I'm a big fan of team approaches like we see at dedicated Cancer Centres or specialised clinics. They have a range from doctors with new ideas but little experience to doctors with old ideas but lots of experience (and everything in-between), together with specialised nurses and technicians to make sure the doctors don't stray too far off track.

Obviously misdiagnoses still happen. They have no absolutely-reliable way to predict how any given cancer will progress or how any given patient will respond to a treatment, and no way at all to detect individual cancer cells until they start to form tumours, so diagnosis has to be a combination of scientific analysis and (highly-educated) guesswork. However, through pooling a treatment team's knowledge and experience, I believe those misdiagnoses will happen less often and patient outcomes will improve.

I am curious what your side effects were with bicalutamide. High dose bicalutamide alone is considered a PAB, peripheral androgen blockade, which is notable because it preserves the testosterone levels in the body while blocking the use of testosterone by cancer cells, thus eliminating a lot of the side effects of ADT. It is considered experimental in this country but in Mexico that might not be the case. When I meet with my radiation oncologists next month to plan treatment for my pC, I am going to ask about it.

I was under the same impression about testosterone and bicalutamide, however I had it tested recently and was 33 - quite low. As for side effects, I’ve had what are some typical ADT side effects. Weight gain (which I have successfully combated with diet and exercise), reduced energy and libido, and Gynecomastia. I don’t like the times when I’m on the bicalutamide, but I really enjoy the vacations.

Agree to every word. But also bear in mind your doctor carries a heavy burden too. He wants you to get well.
Incidentally that is one difference between the trial and your medical team. The trials are only interested in proving something, ie one drug is better than another. Your doctor wants to get your PSA down to < 0.1. If they cant do it with one treatment and or drug, they will try another. The outcome is almost certain to be totally different.
Indeed, the big centers not only have the experience, but also the resources to invest in the latest technology. That can make a BIG difference.