Do the lumps from Firmagon ever go away?

[Grebit]

I had Firmagon May 2018 and Lupron since. One side is small and hard but the other is larger and softer. Has anyone experienced this?

[Andrevz]

Hi Grebit.. im still on Firmagon.. been 18 months.. my lumps went away

[RyderLake2]

Hello, My experience of a year on Firmagon (degarelix) is that the swelling does go away after a couple of days. If it doesn't, the person giving you the injection might not be giving it to you correctly. Google "Firmagon and injection" for tips. Also make sure the medical practitioner alternates sides every month. Hope that helps.

[dhccpa]

I've been on Lupron, but with the Lupron shortage, I got a 6-month Eligard shot in the arm in December. A mildly painful bump developed, but it is gone now.

[farm15]

I was on Firmagon for 12 months and it took almost 2 yrs for the hard and painful lumps if bumped to go away.

[braddockroad]

I initially received Firmagon shots in February 2018 and then went on Lupron. Like farm15, the Firmagon lumps took 2 years to go away.

[TJS-1]

Same experience - several months for monthly maintenance shots, but a couple years for the first “loading dose” (which is a 2x shot/dose). Firmagon is delivered as a depot and timed release, so those hard lumps are the depot-reserve mechanism. These are separate issues from the general swelling and irritation at the injection site- that generally lasts 3-4 days for me after each shot. Apparently having belly fat will mitigate the irritation . . .???

[JPnSD]

After 4 months of Firmagon, I've decided that the 3-4 days of pain and swelling and the hard plaques that form at the site of the injection and last almost 4 months....are no longer worth it. I begin oral Orgovix tablets tomorrow...and get to skip my monthly injection today. What a relief! Since the Orgovyx performs like Firmagon (no PSA Flare, etc.), I am keeping my fingers crossed that the side effects (hot flashes and lethargy mostly) will be the same...or if lucky less than the current situation. I will keep you posted on my progress. I hope to do a Patient Session on people's ADT experiences at this year's PCF Conference.

[rmarkley in reply to JPnSD]

The only trouble with Orgovyx is that it is not approved for use with abiraterone. Firmagon is, hence I am staying on Firmagon. Otherwise my MO would have switched me to Orgovyx.

The depot lumps are a bit of a nuisance, but are not really painful or noticeable after 3-4 days. I have them do the injections as far around to the side as they can, since I am a stomach sleeper, and it was no fun lying on the first, albeit double injection.

[TJS-1 in reply to JPnSD]

Thanks JPnSD - please do report back on your experience with Orgovyx. I think many of us are interested in this alternative.

[GeorgeGlass in reply to JPnSD]

is there a study result that describes what the patients experienced in the trials when they were trying to get FDA approval? I'm curious if the pills will affect good gut bacteria and if vitamins and supplements should be given a few hours apart from this pills. Maybe you can raise these questions at the PCF conference. I just had an appt with Dr. Shore two days ago and he could not answer it. Maybe patients will have to look at blood tests to see if there are any abnormal results. What is the typical cost of the Orgovyx? Does insurance usually cover it?

[GeorgeGlass in reply to JPnSD]

This is all I can find about orgovyx trials:

I would like to know if people are getting the same T level reduction as they were on Lupron or Firmagon. <50 ng/dl doesnt cut the mustard. It needs to be at least <20.

"What are the benefits of this drug (results of trials used to assess efficacy)?

The primary efficacy outcome measure of the clinical trial was medical castration rate defined as achieving and maintaining serum testosterone suppression to castrate levels (< 50 ng/dL) by Day 29 through 48 weeks of treatment.

The efficacy results are shown in Table 1.

Table 1. Medical Castration Rates (Testosterone Concentrations < 50 ng/dL) from Day 29 through Week 48 in ORGOVYX-Treated Patients"

[ARIES29]

I was going on Firmagon soon but after reading the side effects here no way. Had Lupron but the side effects were too much so will try Orgovix tablets & post the results.The only thing that worked for me was the Lutethium 177 but they will not give it to me now, not even at $10,000 aud a shot?

[GeorgeGlass]

This is all I can find about orgovyx trials: I would like to know if people are getting the same T level reduction as they were on Lupron or Firmagon. <50 ng/dl doesnt cut the mustard. It needs to be at least <20.

"What are the benefits of this drug (results of trials used to assess efficacy)?

The primary efficacy outcome measure of the clinical trial was medical castration rate defined as achieving and maintaining serum testosterone suppression to castrate levels (< 50 ng/dL) by Day 29 through 48 weeks of treatment.

The efficacy results are shown in Table 1.

Table 1. Medical Castration Rates (Testosterone Concentrations < 50 ng/dL) from Day 29 through Week 48 in ORGOVYX-Treated Patients"

[JPnSD]

I have been doing monthly PSA and T levels since starting Firmagon...so 4 months at undetectable PSA and 15-18 on T. Only one week on Orgovyx...so another 3 to go before a reading. Will let you know.