I've been on Orgovyx for about 4 1/2 months. I was very reluctant when my RO sentenced me to 2 years of ADT. I asked for Orgovyx when my Medical Oncologist suggested Lupron. I liked the fact that Orgovyx is a daily pill that I could stop any time if the side effects proved to be too horrendous compared to injections that have their effects for months. Recovery towards normal testosterone levels is said to be quicker after stopping this drug than with more traditional ADT injections. There is also evidence that patients taking it have less cardiac problems. One thing is, there is a lot less experience, i.e. data, with Orgovyx as it is a newer drug.

Although as a patient I am supposedly part of this "shared decision making" process, obviously, I was certain that I was, and remain, the least informed person in any discussion with professionals. Its hard to know without long experience how much weight to attach to any particular piece of evidence. I accepted that the pros can be biased, and I spent full time for a lot of weeks attempting to sift through what data I could get my hands on. I dropped all previous urgent priorities for a while, even though I had my hands more than full. I did back out of any further contact with 2 of the docs I consulted. As one of my urologists exclaimed at an appointment: "you are seeing a lot of people!".

My case (cT3b), appears less advanced than yours. However, my RO classified me as "at least high risk", as when you get right down to it, the conclusions the docs reach about what stage any patient is in cannot be certain. The thing is, in cases like yours and mine, the docs know that compared to most of their patients these days, there is a higher risk of death.

Once I started on ADT, I experienced great relief. PSA tests showed my cancer had been dealt a serious blow. Some docs emphatically say that in the whole field of cancer therapy there is nothing like ADT. I'm sure that side effects are piling up. My primary care doc warned me that anemia is setting in. The cancer docs are not worried - they say I'm doing great. Muscle pain such as I've never experienced that I do not understand (as yet) is a problem.

One thing I spent a lot of research time on in the beginning was to seek out a therapy that involved less time on ADT, that my RO would find acceptable. I eventually signed up for the external beam he recommended, but with an HDR brachytherapy boost. See: the TRIP study, or Nelson Stone's talk, Radiation Dose and Hormone Therapy, How Much is Enough? My doc started saying maybe 1 year of ADT would be OK.

However, recovery from ADT does seem to involve a permanent reduction in testosterone levels, that any patient about to start on it should know about.

In addition, a disturbing number of patients never recover anything like their "normal" level of testosterone. I don't remember where I got this graph from, but I don't save things like this unless I have a lot of confidence in the source: