What are Short-term ADT's long-term side effects?

@quaddick
Just to try to be clear, ADT sucks.
Just to various degrees for different men.
But it still sucks.
Hopefully, you will be on the low end of the SEs.
However, for me, it did pass and my life returned to substantially normal.
Best wishes.

@jmacpa
I’m really surprised about you being sore after the Lupron shot. I got them every six months for six years and unless I pressed right into the spot where they gave the shot, I never even felt it. They gave it to me in the hip. Where did they give it to you?

How were your blood counts after being on olaparib? It’s known to really suppress the platelets white blood cell counts and more. I got paid to review some documentation on its side effects and they were pretty scary. I was actually on it for about a week and had nightmares every night like I’ve never had before. My oncologist let me switch to Nubeqa And I’ve been undetectable for almost 2 years. Had PC for 15 years and found out about my BRCA2 five years ago. My oncologist wants me to wait until Nubeqa Fails because the PARP inhibitor is so hard on the body. Some of my blood test results show me close to anemia, and it would almost definitely push me into it.

@jeffmarc my shot was in my glute and i was EXTREMELY sore / painful after the shot - like a pain in my glute that i've never felt before. so sore that the first few days it was difficult to sit and that lasted for 4 or 5 days.

I was monitored monthly and my blood counts did go down slightly but not too bad. Honestly I had more long term side effects from Lupron than Oliparb. The biggest PARP side effect for me was my stomach and my digestive system. That is a known side effect that they said would get better in a few months and at almost the exact 2 month mark those digestive issues subsided.

I can say that I never felt great during those 6 months and I can't really say if it was from the Lupron or the Olaparib. It was def worth the short-term pain because the results were great. The trial was 6 months but my gut tells me if I was on it for another 3 months I would have been cancer free.

My post-surgery pathology showed only a very small amount of contained cancer , lymph nodes good, no positive margins so the trial was certainly helped. If I had just had surgery (no trial drugs), one surgeon said you have a VERY high likelihood of recurrence within 5 years given your genetics and gleason score. The idea behind treating the cancer before surgery actually comes from breast cancer and they have seen very good results. I found out from my UPenn docs (which is a BRCA center) that prostate cancer is at least a decade behind breast cancer research. They have found that a lot of similarities between the 2 cancers and are finding many of the BC therapies have application on PC.

It's also amazing how little knowledge most docs have about BRCA - My GP doc always thought my PSA was fine (3.5) and so did my urologist. It was only when it jumped to 5 within 4 months that my urologist suggested an MRI which found the cancer. What I found out after speaking with docs from UPenn is that 4 is NOT the limit for BRCA+ and a PSA over 1.5 should have put me in surveillance mode. My urologist and GP had no idea - I saw 6 docs for opinions when i was diagnosed with PC and only 1 doc (besides the docs at UPenn) knew anything about BRCA and the affects on PC.

@jmacpa
UCSF is very experienced in treating people with BRCA. They specialize in treating it.

Hopefully your trial gives you long term remission. After surgery, it was 3 1/2 years before my PSA started rising again, Then I had salvage radiation in 2 1/2 years later it started rising again. Back then, they didn’t even know how to test for BRCA2.

It would appear my prostate cancer has returned. And has metastasized to several lymph nodes. I’m currently doing only SPRT on the lymph nodes, which is very precise and hopefully this will buy me some more time and maybe cure me. I noticed you’re using nubeqa. my oncologist has also recommended this knowing my strong reluctance to doing ADT therapy. He said this works differently and will not cause all the different side effects from traditional Adt therapy. What’s your experience? Results, side effects, etc
Sounds like you’re doing well!

@whatthef
I was on Zytiga for 2 1/2 years and the side effects of that drug are just incredible. Causes high blood pressure caused me to have multiple afib events, Caused me to have severe hot flashes and more.

Nubeqa On the other hand has shown me no side effects at all. It doesn’t pass the blood brain barrier so it doesn’t cause brain fog. It works, even if you have testosterone, though if you have too much, it can be a problem In how effective it is. When I was on Zytiga I was undetectable for one month in 2 1/2 years. With Nubeqa I’ve been undetectable for the last 23 months. I know many people using it as their only drug a lot of them are in their late 70s and 80s. A couple of people have reported fatigue side effects, but it is rare. I have been on ADT For almost 9 years and adding Nubeqa has been really great, I’ll be 78 in a couple of weeks and I could not be more pleased with it. Had PC for 15 years and I have BRCA2 which causes it to keep reoccurring, nice to have a drug that keeps it under control.

Appears to be never ending for some, like me. I never had any issue with the injection location.
14 months after my last shot, side effects are no better! Severely shrunken penis. As one other
guy described, 'appears like a turtle head peeping out', extreme stiffness, achy joints, 15+ lbs
gained in the stomach, little endurance. Good luck to the rest of you. Happy weekend.

You ask..."Are the side effects for short-term ADT only temporary?"

I can relate my experience and thoughts...

I did ADT twice, 18 months on Lupron, 12 months on Orgovyx

I experienced the "usual" side effects:
Hot flashes
Fatigue
Muscle and joint stiffness
Genitalia shrinkage
Weight gain, particularly abdominal

What I did not experience"
Loss of libido
ED
Psychological issues such as depression.

In both cases, those side effects went away in the first three to six months after coming off treatment, coinciding with the return of T.

Like most of us on this forum, we live with the side effects. I travelled, went to the gym, rode my bike, did the yard work, walked our dog...the difference on versus off treatment, how I felt doing the things I do in my life.

Mitigating strategies, in moderation:
Diet
Exercise
Managing Stress

There were little things. In the dead of winter, I would rarely run the heater in my car. I refused to wear pullovers since getting them off in the midst of a hot flash was arduous. When entertaining in the winter I would slip out on the deck. ice water was my friend as were fans, the ice tub vs the hot tub at the gym, never did my lap swims in the heated pool,,,

As others have said, experiences will vary as to the severity and impact of side effects, think statistics, Bell Curve and Standard Deviations, Mean, Averages...In my case, as I've said before, it wasn't that ADT prevented me from living, just how I felt living it,

Kevin

@brianjarvis My experience was substantially the same, except I had 6 months of Orgovyx, but also 28 proton sessions. Very few side effects. Biggest was no libido, not sure about ED since I had no libido, but no ED now 3 months post Orgovyx. My testosterone went from 6 to 110 one month after stopping ADT. I had a few "warm" flashes but that was about the only other SE. I also ran and lifted throughout the treatment, and as with Brian it was something I had been doing regularly before so it wasn't hard to keep it up. All men have different experiences but from the readingI've done, and experiences of men on this forum, exercise seems to the key to reducing SE.

@daveinflorida - hey Dave - I'm currently on my 7th month of orgavux, I finished 28radition sessions mid August. My doctor wants 3yrs. ADT. My situation was gleason 8 with seminal vesicles also infected. My 1st psa came < 0.1 . Just wondering your decision to only do 6months of ADT. I have been reading many studies suggesting intermentent ADT is okay with psa test regularly. Thxs - Gary - Sebastian Fl.