Has anyone else moved from Firmagon to Orgovyx?

Posted by northoftheborder @northoftheborder, Apr 11 1:16pm

I have stage 4 (oligometastatic) prostate cancer, and will be on ADT and androgen-reception inhibitors, basically, forever. I've been on monthly Firmagon (Degarelix) injections for over 2 1/2 years — Lupron was contra-indicated because I already had high PSA and a metastasis, so we didn't want an initial testosterone surge — and I'd assumed that I'd just have to learn to live with 3 sick days every month and abdominal swelling and soreness at the injection site forever.

Fortunately, Health Canada has just approved Orgovyx (Relugolix) for use in our country, and the head of my oncology team put me on it right away — I'll start at the end of April, as soon as my current Firmagon shot expires.

I'd love to hear from others who have made this transition, since Orgovyx has been available in the U.S. for a couple of years already. What were your experiences? I expect that the chronic day-to-day symptoms are the same, but I'm excited about no longer having the acute symptoms for a few days after every injection.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

kujhawk1978 | @kujhawk1978 | Jul 5 8:09am

I didn't make the transition so can only speak to the SEs.

There are numerous reasons for transitioning to Orgovyx:

Some healthwise.
Others financially, depending on your insurance.
Quality of life

Healthwise:
Lower cardiovascular side effects profile.
Faster to castration
No flare
Higher sustained castration rates
Faster recovery of T when stopping.
Side effects, the usual when T goes to damn near zero

Finished 12 months on Orgovyx on 3 April, my side effects:
Hot flashes
Fatigue
Muscle and joint stiffness
Genitalia shrinkage.

All were "annoying" but did not interfere with living...wife and I took trips to Iceland and Oregon, rode a 55 mile gravel bike ride event with mu sister, went skiing with friends in Colorado...I expect my SEs were annoying because I take care of the things I can control:

Diet
Exercise
Managing stress.

Financially, I have TRICARE for Life as my Part D, $48 for every 90 days.

I didn't have to go in to my doctors and have a shot administered as I did with the 18 months of Lupron, 6x90 days. When I'd get the bill for those shots there was the cost of Lupron, his fee and the administering nurse's which given how long he poked his head in the treatment room and she spent administering the damn shot, were pretty expensive, more than the SAE mechanic who works on my cars!

As others have said, you don't have to schedule around the shot, just take the pills wherever you are!

Kevin

scaramouche | @scaramouche | Oct 28 10:42am

After nine years on Firmagon, I recently moved to Lupron which reduced the number of shots required per year as well as the immediate ill after effects of these. Having said this, as it is thought that Lupron isn’t as heart friendly, nor does it make me feel as well overall as when I used Firmagon, I was ready to return to the dreaded monthly shots to my abdomen, that is until I discovered Orgovyx on the Internet. After discussions with my oncologist, I’m about to start this next week and hoping that I will feel as good as I did on Firmagon, albeit without the shot every 28 days and the two to three days I felt quite unwell after each one. I should mention that I also take Enzalutimide every day and have done so for the last seven years. PS In 2013 and at age 62, I was diagnosed with inoperable Stage 4 PC, Gleason Score 9 with painful bone metastases. It made for a pretty bleak outlook but with God’s blessing, terrific doctors along with novel medications as well as a few supplements, I’ve managed to be here to welcome 4 grand daughters, now all under 4 years of age. My retirement has been far from what I’d had once hoped for, but certainly better than the alternative and for this, I try to remember to give thanks each and every day.

northoftheborder | @northoftheborder | Oct 28 11:05am

In reply to @scaramouche "After nine years on Firmagon, I recently moved to Lupron which reduced the number of shots..." + (show)

I've been three years on ADT + Apalutamide with bone mets as well, starting at age 56. The first 2½ years I was on Firmagon for the ADT, then I switched to Orgovyx (Relugolix) last spring.

Even though Orgovyx is essentially the same thing as Firmagon — a GnRH receptor antagonist — I've noticed a huge improvement in quality of life since the switch, as I've mentioned in other posts. I still get hot flushes sometimes, but taking a microdose in pill form every day has resulted in more mild side-effects and reduced fatigue, as well as avoiding those 2–3 sick days after every monthly shot that you mentioned and the swelling and rash around the injection site.

I hope your experience is similar. Best of luck!

michaelcharles | @michaelcharles | Oct 29 9:21am

In reply to @scaramouche "After nine years on Firmagon, I recently moved to Lupron which reduced the number of shots..." + (show)

I took Orgovyx and while "ADT Sucks" , I think from my experience and posts on this site that it is as good as it gets. And I am grateful for ADT medication to help me in my PCa battle.
Sincere best wishes.

scaramouche | @scaramouche | Oct 31 4:45pm

In reply to @northoftheborder "I've been three years on ADT + Apalutamide with bone mets as well, starting at age..." + (show)

Thank you for your reply. I do hope my experience is similar to yours All the best, always

topsz | @topsz | Nov 1 10:31am

In reply to @northoftheborder "I've been three years on ADT + Apalutamide with bone mets as well, starting at age..." + (show)

Any problems with low hemoglobin?

northoftheborder | @northoftheborder | Nov 1 2:49pm

In reply to @topsz "Any problems with low hemoglobin?" + (show)

Yes, borderline low hemoglobin compared to the male population overall, but not enough to worry the doctors. It wavers just above or below the "normal" cutoff with each blood test. Before cancer and ADT, I was always near the high end of normal, even after >25 years as a vegetarian.

I might ask about iron supplements when I see my oncologist next month, but I'm not showing any symptoms of anemia.

mark1952 | @mark1952 | Nov 2 8:54am

In reply to @scaramouche "After nine years on Firmagon, I recently moved to Lupron which reduced the number of shots..." + (show)

Hello, scaramouche,
I am just into my second month on Orgovyx. My biggest problem with Orgovyx has been constipation. I had pre-existing chronic constipation and the Orgovyx has made it considerably worse, plus I seem to have stomach cramping and pain, which may or may not be related to the increased constipation. But the good news is no hot flashes, no big loss of energy, no weight gain, no breast enlargement, no suicidal thoughts, etc. I have had pretty minor, and intermittent, joint pain, muscle pain, and restless leg syndrome (at night). From what others have experienced, my side-effects could be much worse. Best of luck to you!

scaramouche | @scaramouche | Nov 3 7:33pm

Hi Mark
I’ve been dealing with constipation for years due to the daily use of pain meds.
I try to drink a lot of water and use Sennacot tabs as well as Senna tea (Smooth Move) every second night. For what it is worth. Best wishes