MCRPC, Lupron stopped, then Orgovyx

For the first time in 18 months, my PSA went down, from 43 to 35.2 (18%). I had passed on my 3-month Lupron shot last September as my docs said it simply wasn’t working and that I could stop if I wanted. I’d had Zytiga for 19 months before PSA climb, then Xtandi for 5 months. In the previous 4 months before I stopped Lupron, my PSA went from 3.1 to over 12. One year before, PSA was 0.4.

In October I did three Provenge treatments as PSA continued to climb. This past February, I was interested in LU-177 trials but discovered that my T-level was 67, and most trials required T-level under 50. That’s when I decided to go back to Lupron—except there was something new called Orgovyx. I started Orgovyx Feb 10. On Feb 15 my T-level was <7, and my PSA had jumped from 29.7 to 43, a 45% jump—largest ever.

Then I did labs on March 15, and expected PSA would be close to 60, given the recent trajectory. PSA was 35.2. Yes, that’s only one test—but the change is dramatic. With 30-40% MONTHLY PSA increases the norm this past year, a DROP of any amount is significant. What this tells me is that while you can be deemed castrate resistant, that doesn’t mean your cancer is 100% CRPC. This may be why many docs (including mine) generally recommend you stay on Lupron forever.

As for Orgovyx, before claiming it as some wonder drug, I can tell you I like taking a single pill each day vs a 3-month shot, because I can stop anytime I want or need to. But otherwise, Orgovix has no more SE’s for me than Lupron. May even be slightly less, though fatigue mixed with age is hard to quantify and compare.

It will be interesting to see how long Orgovyx might hold down PSA, but thought you all should know a little about this new Lupron-like drug--that so far for me, is working quite well.

Hello Steve55777 ~~~

I always follow your posts --- it looks like your new form of ADT wrestled the testosterone levels back down.

We all need to remember the importance of tracking testosterone levels, in conjunction with PSA levels while on ADT. There's often a correlation, and my doctor tracks testosterone levels as well as PSA, along with one's usual lab results.

My first form of ADT -- LUPRON --- wasn't working as well as subsequent forms of ADT we later tried.

My lesson learned? A simple testosterone test led to this discovery --- and made a huge difference. My oncologist discovered this the first week I met him --- a huge oversight on the part of my original urologist, who got me started on ADT shots initially. ALL my ADT shots and labs and scans are now overseen by my oncologist. Always better to have at least two sets of eyes on your medical care.

Anyone on ADT --- simply ask your doctor for an occasional testosterone test if on ADT, when you have your next PSA test.

Steve55777 ---- did you feel that PROVENGE paid dividends for you? We don't seem to hear as much about it --- as we do about other treatments.

I know you are looking at "next step" treatments --- have your doctors considered a specially blended form of chemotherapy infusions for you, to take another blast at things, once again?

Some years ago, there was high interest in determining whether a round of chemotherapy would allow medications like XTANDI or ZYTIGA another chance to work, yet again. I thought the idea was promising, at least in theory.

I am thankful, beyond words, to hear of the noticeable drop in PSA levels. Something was "kicking in" and working !

Appreciative of your new details on ORGOVYX --- a new ADT option that I am sure we will start hearing even more about, as time goes along.

With more options, costs of the various forms of ADT may decrease, in time, due to new product competition in that category of treatments.

It's encouraging to always know there are definitely new weapons being added to the castle armory ---- new "arrows in the quiver" !

Thanks for sharing new details about ORGOVYX -- and blazing a new trail!

Thankful to read your update today, Steve55777 ---
CYCLONE - # Iowa State University

CYCLONE - Thanks as always for your thoughts. Provenge likely doesn't get much press here because there's probably not much to report. No SEs, no PSA drop, and it's anyone's guess what it does to kill any PC. Leading up to Provenge #1, my PSA was 12.3. After the second Provenge, it was 17.7. Three weeks after the third Provenge, PSA was 20.9. A month later PSA was 29.7. I'm just told by my docs and others that "men who do Provenge live longer." Well, okay. Provenge: the silent helper...

As for Taxotere, my docs say I need to do SOMETHING--and if I can't get into an LU-177 trial in the next month or so, I should begin another round of chemo, probably Jevtana, though Dr. Lam says either that or Taxotere could be done. My first 6-dose Taxotere was between 2/2018 and 5/2018.

I really don't want more chemo, but unless I can get LU-177 through trial, FDA approval, or dumping my savings and going to live in Australia for a couple months, that's what I'll need to do.

The journey continues........

Hello Steve55777 ~~~

Been thinking about you.

I am glad you got the testosterone knocked back down below 7, by adding LUPRON back to the mix.

That way, you're doing all you can to eliminate the extra "fuel that can feed the fire" ...

In my case, I started with LUPRON, but my oncologist discovered "spikes and flares" in the testosterone, which resulted in troubling spikes in my PSA. I next tried FIRMAGON --- and a few months later found that ZOLADEX worked best for me. It knocked the testosterone down below 7, which LUPRON is doing for you.

I think we all get fixated on PSA levels, when on ADT. Our cases underscore the importance of asking one's doctor to order a testosterone test, occasionally, when doing usual labs.

Wondering how often you are tracking your PSA levels? I know you have updated PSA scores, and are watching things carefully.

I was wondering if you have had recent scans or imaging, to see where any trouble spots might be lurking? When I go to Mayo Clinic, they emphasize the importance of keeping scans up-to-date for my case.

My local oncologist uses those scans to guide his care plan for me, as well.
I see him each month, and I typically visit Mayo Clinic twice a year.

In your case, is there a possibility that radiation could help, with a trouble spot? Any leads on clinical trials in your area?

Meanwhile, it sounds like Dr. Lam is in favor of a new series of chemotherapy infusions --- either JEVTANA or TAXOTERE?

Just checking in with you today, Steve55777.

I follow all your posts, and know you are staying vigilant and proactive --- and facing forward.

Handshake, from across the miles, from "one brother to another" ~~~
CYCLONE ~ # Iowa State University

Hello, Strve55777 ~~~

Wondering how you are doing, now that winter faded away and spring is here.

I have had the pelvic and abdominal scan you mentioned in your last post. One of them lasted 90 minutes, within a tight "tunnel" ---- that's when minutes seem like hours.

I am always thankful for those shorter scans --- 30 minutes or less.

Like you, my oncologist tracks my PSA, testosterone, and so forth --- each and every month.

The oncology department has its own lab for oncology patients --- so everyone there knows me well by now, visiting there each month.

They have found better success drawing the labs from the top of my hands, rather than drawing labs from my arms.

So -- I remember to drink extra water for a couple of days before each lab visit, to hydrate my veins --- I "windmill" my arms upon arrival at the lab to boost circulation, and then they have me soak my hand under a warm running faucet for a couple of minutes ---- and this method "works the magic" for me at the lab.

This simple method for lab draws may help another reader out there! Works for me! Hydration for a couple days before each lab draw helps everyone. Remember to drink water!

You were considering a series of TAXOTERE or perhaps JEVTANA infusions next --- just checking in with you this weekend, to see how you are doing --- and if you have any treatments booked yet?

Wanting all the best for you, Steve55777 --- no one here fights alone!

We all walk alongside each other ---- brothers in the battle ---- all for one, and one for ALL!

My best to you, from "one brother to another" ~~~
CYCLONE ~ # Iowa State University

Hi Steve. My husband is starting Orgovyx (120 mg) tomorrow. HIs care is thru Moffitt Cancer Center in Tampa and will be only their third individual so far on this new drug. Diagnosed in 2013 as PT3B gleason 3+4 with tertiary 5. This led to surgery, then eight months later radiation, followed two years later with Casodex monotherapy (intermittent) which lasted close to three years then a year on Nilutamide monotherapy (intermittent as well). Only things scans ever show are two iliac lymph nodes that increase and decrease according to time on meds, but most recent CT scan shows the lymph nodes have increased again. Thus the reason doc thinks it's time to start stronger drug. Doc was very excited about Orgovyx, especially in that cardiac issues are less than Lupron and testosterone recovery is much quicker. We'll see what happens. Especially with side affects that you can't seem to get away from. Long story short - was wondering how you're doing on Orgovyx and if you have any suggestions/tips for hubby. Best of luck to you.

One other note-- I much prefer Orgovyx to my 3-month Lupron shot because I can stop taking pills at any time, whereas if I just got a Lupron shot, it's with me another 3 months... Just a thought.