Benefits of staying on hormone treatment past recommended 24 months

With stage 4b (remote metastases), we usually stay on ADT and some kind of ARSI forever. I'll be at 4 years this fall, and there are people here in the forum who've been taking it far longer.

In my case, while I don't love the side-effects or Orgovyx + Erleada, my body adjusted to them after a couple of years, and they don't interfere much with enjoying my life now.

It is a tough trade-off. If you go off ADT, there's a risk of your cancer coming back as castrate-resistant; if you stay on ADT, there's elevated risk of heart disease, diabetes, and osteoporosis (among other ailments).

For me, with a history of remote metastasis, the cancer is clearly the bigger threat, so it's an easy choice to stay on; for you, it might be trickier.

Not as severe a case, but with BRCA2 I stayed on ADT for 8 years. I only quit ADT because I was on it so long it’s unlikely my testosterone will ever come back much. If it does, I have to go back on ADT. I am on Nubeqa.

I walk at least 2 miles every day on the track and go to the gym three times a week. Never had much of a problem with fatigue And it sure helps when your muscles deteriorate after taking these drugs and your bones weaken as well without doing some weight training.

In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 18 months I’ve been undetectable. I became stage four about six years ago. I did not find out I was BRCA2 Until four years ago.

I figured that When Nubeqa Stops working I will start taking the PARP, I am concerned about the wbc, RBC and platelets, Which are just some of the things I can have problems with when on a PARP inhibitor.

Depending on your cancer case some doctors want to use a PARP Inhibitor early. Read up on it and you will find some articles that discuss it.

Everyone is different with prostate cancer so I can’t tell you what your best choice is, ask your doctor, hopefully, you are working with the center of excellence that can better guide you on what to do.

I had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor. I went on abiraterone 1.5 years later and the hot flashes came back, not as frequent or strong,
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Can’t hurt to try it. Black Cohash is also said to help. Acupuncture works for some people.

I have an embrlabs.com wave product (wave 2). I’ve used it for Over three years now. It’s like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode . Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device . When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.
https://embrlabs.com/

Thanks for the good information, I’m thinking I might stay on it longer than the recommended 24months. My oncologist is open to the idea, but warned me of the risks, but I think it’s a reasonable trade off.

I haven’t heard of wave two for hot flashes, I’ll definitely look into it. Thanks for the information. For my fatigue I work out three times a week and also go ice skating which in combination really seems to help. I’m seeing an oncologist at Northwestern Medicine in Chicago which is considered a center of excellence. He is open to me staying on ADT longer, but I’m thinking I might also get another opinion, probably Mayo. Thanks for responding.

Top GU Oncologist in Chicago
At U of Chicago Russell Szmulewitz, MD - UChicago Medicine
Or at Northwestern David J VanderWeele : Physician Profile: Robert H. Lurie Comprehensive Cancer Center of Northwestern University : Feinberg School of Medicine: Northwestern University

Watch bone density via bone scans and test vitamin b12. 23 months Oorgovyx/abi and fatigue was intense. Off the drugs 8wks still fatigued. Further tests showed xtremely low b12. Taking 1000 units daily and improving. Can t tell if system is clearing out drugs or b12 helping but relief is relief, spine has -1.7 ostopenia.

A B12 supplement (or nutritional yeast) is especially important if you're eating a predominantly plant-based diet, because B12 comes mainly from meat, eggs, and dairy. That applies even for people not on ADT.

Thank, Dr. Vanderwheele is my oncologist at Northwestern Medicine. He’s very good.

That’s a long stretch on ADT….but if your oncologist feels that a cure is in the offing, isn’t triplet therapy including chemo (docetaxel) usually included?
You really seem motivated to hit it hard - and I agree! - so maybe a shorter , more
Aggressive form of therapy might be helpful, especially with the BRCA2.
Phil

Well, you could come off treatment and then actively monitor with labs, consults and depending on insurance imaging.

The frequency of those, discuss with your medical team, likely every three months for consult and labs, six to 12 for imaging.

There are isolator continuing, castrate resistance, the side effects, impacts to your systems - organ, bone...the impacts to bone, organs can be monitored and mitigated.

There are different schools of thought on curing advanced PCa. Let's hope your medical team is right but have a plan for lifelong management!

If you come off treatment, one benefit may depend on T recovery, how long it takes vice how long your PCa takes to get active again. That's an unknown, baseline T, age, duration of ADT.

One scenario is you cone off treatment, your T is slow to recover but your PCa is not, then, what have you gained? Then again, the opposite could occur, T recovers quickly, PCa slumbers along much longer, life with T is good, that we know!

The two tines I've been on ADT have not gotten in the way of what I do, just how I feel doing it.

There are mitigating strategies that you control:

Diet
Exercise
Managing stress.

As other indicate, your medical team has some medical aids to mitigating the side effects too.

There is no right answer here. There are good answers based on guidelines such as NCCN and AUA, the "science." There is more clinical data in a multitude of clinical trials too.

If you have confidence and trust in your medical team, consider their recommendations in your decision making!

Kevin