My ADT Story, Feedback Appreciated

My husbands cancer just returned for the third time his dr has put him on biclutamide for 14 days then an injection and 14 more days of the pills. Can I ask why they keep changing yours? Thanks so much

My experience...

I've done ADT twice, once starting in January 2017 18 months of Lupron, 6 x 90 day shots as part of triplet therapy. The second time in April 2023 in conjunction with SBRT, 12 months of Orgovyx.

I am high risk, GS8, GG4, 18 months to BCR, rapid PSADT and PSAV.

There are some thoughts that given my clinical data, I should be on continuous treatment, ADT not intermittently...I enjoy my time off treatment as T returns, gone are the annoying side effects, fatigue, hot flashes, muscle and joint stiffness. It's not that being on ADT interferes in my life and what I do, I just feel better doing the same things off it!

As you can see from my clinical history (attached), I have been on treatment for roughly three out of the 11+ years since my diagnosis. Why, I don't know, given my high-risk clinical history, there is some, well, a lot, of literature hat says I should be on continuous ADT. My medical team supports my decision to treat for defined periods, then, following the clinical data, come off treatment and actively monitor, labs and consults every three months with decision criteria about going back on - three or more PSA increases spaced three months apart, PSA between .5-1.0, image, then decide if to treat, when, with what, for what period...given the pace of advances by medical researchers in imaging and treatments, there is generally something new when it's time to go back on treatments

To be honest, I have concerns with continuous ADT and castrate resistance.

You ask "should I come off Orgovyx...?" That is a discussion with your medical team and a decision by you and them. If you do, have a plan to actively monitor, what labs, what consults, when, how far apart and what may constitute clinical data to resume treatment,

Kevin

All of the ADT Products affect people in pretty much the same way. I’ve been on Lupron for 7 years and then Orgovyx (relusgolix) for about a year. There is no difference in the side effects.

These are the most common side effects

Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

One big reason I switched to Orgovyx Was cost. Orgovyx Cost me nothing because in January I exceeded the $2000 maximum for Medicare prescriptions so everything‘s free after that. Kaiser started charging me $600 to get my Lupron injection every six months. The pills are a lot better deal at free.

Orgovyx is the one most of us prefer, While the side effects are the same when you stop taking it, your testosterone comes back faster so you feel better quicker. While that list of side effects seems daunting not all of the side effects Hit everyone.. I’ve been on ADT for eight years and it’s really not a problem, Even after 15 years of PC, and 4 reoccurrences my life is the same as just about everyone else, No one knows I have prostate cancer unless I tell them. I just have to get blood test every month.

If you get him on Orgovyx He will not need that 14 days of pills before starting. The thing is, Many doctors do not give those 14 days of pills before, yet it is essential. That tells me the doctor you were going to knows what they are doing and is quite knowledgeable.

Was a PSMA pet scan done on him? This is sort of essential and should be done before starting ADT. You need to ask the doctor about this and requested to be done, Though I would suspect your doctor already knows that.

Have they talked about the fact that he’s going to need radiation and or chemotherapy? Radiation is probably needed, but chemo would only be needed if he had a lot of metastasis. This is something your doctor needs to talk to you about and you need to be real aware of what options you have.

If you would have asked if ADT is the best and safest the answer is NO. The patch trial Completed in England recently and showed that estradiol worked just the same as ADT, but had many fewer side effects. It’s easier on your cardiovascular system, On your bones (osteoporosis), causes fewer hot flashes and less brain fog. If your doctor has not heard of the patch trial, there is a lot of information about it so come back and we can help you. Estradiol is the most commonly used in a patch, But they also have injections and gels that make it easier to use. If you come back and ask, you can get more help on this.

I also had surgery, 3 1/2 years later, it came back and I had radiation, 2 1/2 years later, it came back and I started on ADT drugs, they failed and I started on Zytiga. I switched to Darolutamide Because Zytiga was causing me afib Events and I ended up in the hospital for four days with one. My oncologist said no more Zytiga, sto I switched to Darolutamide Since it has the least side effects of all of the ARSI drugs. I also had SBRT radiation on my spine, where I had a metastasis. Your husband may need the same sort of thing, to metastasis on his body. ADT (or estradiol) can shrink it before radiation.

Lupron and wreck you too. Lipids, glucose and heart.

My husband prostrate surgery was in 2003 and 38 rounds of radiation in 2011. We changed our oncologist who did a pet scan and that’s how he found he had cancer in his lymph nodes on the left side of his urethra. As I said he is currently on the 14 day pills, I mentioned the Orgovyx to him he felt there was not a lot of difference in the side effects even though I mentioned that this one has less side effects to the heart? Although reading some of the other comments they mentioned it had more side effects for one’s kidneys and strokes.you are a wealth of information which I appreciate, I will ask him about the estradiol sounds promising I wonder what the difference in being effective is?
My husband is 85 and has had lung cancer but the cancer seems to be contained at the sides of his urethra. He also has MCI early stages I think but never diagnosed I have not mentioned this yet my plan is to tell him his psa level is rising and this will lower it without mentioning the C word. I don’t want him to worry anymore.
Your info was invaluable thanks so much for taking the time to respond

The patch study, which completed in England, a few months ago showed that the estradiol patch works just as well as ADT to suppress testosterone.

Here is a video given by Richard Wassersug, Ph.D, author of Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones that is now in its 3rd Edition. He’s been on estradiol for years.

Thank you, I will check it out. Although I thought it was estrogen based? Which can cause cancer? Obviously I need to check out your research. Thx again