Why is my RO changing from Degerelix to Lupron after a month?

[SherryKahn]

my husband started ADT treatment and RO informed him that after a month he will switch to Lupron. Is there a reason why he is doing this? As Lupron I read causes depression, anxiety. And if hopefully Degerelix works why change it? Can we request he not ? TIA.

[JohnInTheMiddle]

This forum is great, except for curation. Here are my posts answering your question. I may add more.

OF COURSE YOU CAN STAY ON FIRMAGON.

I stayed on Firmagon - for scientific reasons not for bogus reasons of convenience - and have a private nurse visit every 28 days to assure injection quality. (You may have to scroll - and I think in one case I have more than one comment).

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[JohnInTheMiddle]

Also, you can put this in bio, and I don't remember if you shared this before, do you have an MO? When all you have is a hammer pretty soon everything begins to look like a nail.

PCa, once metastasized, is system-wide phenomenon with potentially invisible micro-metastases here and there. And driven by astonishingly complex biological and biochemical processes.

Metastatic prostate cancer is is a job for a medical oncologist. Not a mechanic or a photographer. (Says the guy who said to his wife recently, two years after a devastating diagnosis of excruciatingly painful high-volume metastatic Stage IV prostate cancer, "I feel kind of normal".)

[SherryKahn in reply to JohnInTheMiddle]

My husband’s has a team of a MO, RO and a surgeon which I hope he will not need all at Memorial Sloane. Thank you for the links to your previous posts on the topic.

[JohnInTheMiddle]

I need to add an additional comment explaining why Firmagon may be used by a doctor in the first place.

As a GnRH antagonist ADT, Firmagon/Degarelix suppresses the manufacture of Testosterone immediately - and prostate cancer immediately start to shrink. This could be an emergency requirement if, like me for example, a mass is pressing on the spinal cord. Product requires an injection every 28 days.

On the other hand, if there's no emergency, one usually gets Lupron or some other GnRH agonist ADT. This method over-drives Testosterone manufacture, until it burns out and manufacture stops. But the first phase after initial administration will see "Testosterone flare". And cancerous masses may even temporarily increase in size! Until the flare subsides and Testosterone manufacture stops

This explains why sometimes doctors start with Firmagon then try to get you to switch to Lupron later.

[SherryKahn]

Very helpful thank you!

[Tall_Allen]

It is common to do that. Lupron creates an initial surge of testosterone that activates androgen receptors. A month of degarelix prevents his body from generating any testosterone at all, so the initial surge is prevented. Both degarelix and Lupron side effects are caused by castration-level testosterone, so it doesn't matter which he takes. Multi-month Lupron is more convenient and doesn't cause injection-site reactions as much as Firmagon.

[SherryKahn in reply to Tall_Allen]

Thank you so much for this detailed response so helpful. What about Orgovyx? Do you think it is as effective as the other two without the hassle of a needle?

[Tall_Allen in reply to SherryKahn]

They are all equally effective. I think a shot in the butt every 3-6 months is less of a hassle than remembering to take a pill everyday. Missing even one day of Orgovyx allows testosterone to come charging back, so strict compliance is critical.

[SherryKahn in reply to Tall_Allen]

Excellent point.

[JohnInTheMiddle in reply to Tall_Allen]

Wow. I did not realize even one day missed with Orgovyx would be an issue. With my 28-day Firmagon, due to logistics I had a single situation where the injection was on day 30. Obviously based on depot technology it's not the same thing as the daily pill. From what I could find there was no danger of testosterone "charging back" - based on the pharmacokinetics of the depot and the drug.

[JohnInTheMiddle in reply to Tall_Allen]

Your comment Allen how about injection site reactions with Firmagon is very important. As I have shared, I have solved this problem completely. By having a fantastic specialist nurse visit every 28 days to do my Firmagon injection.

Whereas previously I had site reactions - a painful red bump etc - which were tolerable I should say, I now have no sight reactions except a slight itchiness or minimal ache at the bump for maybe a day. And even sometimes not even that. (Also note added later - I have never had hot flashes.)

It's an interesting side note that the hospital nurses always injected in the front of the stomach above the beltline. My visiting nurse always injects in the "love handles", of course switching each month side to side.

This seems to be an indictment of inconsistent and even incompetent nursing services for Firmagon injection. I became aware that some nurses had never done it before and had had the procedure explain to them half an hour before.

I read Ferring's injection instructions and even some academic documents on the topic. And the procedures are very precise.

Conclusion: Firmagon injection site reactions are unnecessary and should not be "a thing".

(I note I've written another long comment -and together with the other notes I've written and replied to Sherry - that's a lot of notes. Why is this? Other than I'm not working full time, and can afford to do it, there are a lot of details associated with the ADT question. And it's worthwhile getting it right. Most people don't make a decision to stay or not with Firmagon. They just do what the doctor says. And it took me a lot of research to figure out the nursing problem. PCa requires a lot of thinking and managing if one is not going to just be a passive patient. Which is kind of a role of the dice that every medical specialist partner is doing a good job. They might be!)

[SherryKahn in reply to JohnInTheMiddle]

Thank you so much for the detailed information.

[Tall_Allen in reply to JohnInTheMiddle]

Usually site reactions with Firmagon only occur on the first two injections, but some guys continue to have site reactions. Some guys are able to reduce them by icing the area before or after. What works for you may not work for someone else. Also, many of us cannot afford a visiting nurse.

[JohnInTheMiddle in reply to Tall_Allen]

Good points. Concerning the injection experience, for a year and a half it was very inconsistent, every 28 days.

Sometimes the Firmagon injection was quite painful and sometimes sort of okay. But in no consistent direction of getting better. I might have a good experience and then the next one was worse again.

This leads me to believe that this experience with Firmagon injections was not just a trend to tolerance. Something else going on, from my reading probably injection skill. And once injections we're done every month by the same specialist nurse, no issues at all.

Concerning the nurse coming to my home, this is fortunately funded by interested parties.

[Tall_Allen in reply to JohnInTheMiddle]

The first two Firmagon doses are larger loading doses.

[Magnus1964]

Good question. That is not enough time to evaluate a drug's effectiveness. I would hold his feet to the fire on this.