Firmagon: Just got back biopsy results... - Advanced Prostate...

Advanced Prostate Cancer

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Firmagon

3100connecticut profile image
9 Replies

Just got back biopsy results: Gleason 5 + 4 = 9 bilaterally. PSA 14.8.

"Not good, not good," said urologist, a man of few words.

He recommended Firmagon injections every three months to begin tomorrow (Friday). Apparently this drug is relatively new here (Thailand) and had to be special ordered.

Anyone taking Firmagon? According to what I've read (and what doc said) the chief benefit is that it acts faster to reduce testosterone without the weeks-long testosterone "flash" with other ADTs. Would appreciate any experiences.

Thank you all.

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3100connecticut profile image
3100connecticut
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Tall_Allen profile image
Tall_Allen

Are you getting a bone scan/CT?

3100connecticut profile image
3100connecticut in reply to Tall_Allen

Yeah, already had a bone scan. Said "metastatic lesion at left sacroiliac region cannot be ruled out." Urologist said Firmagon would probably mitigate that.

Oddly, despite discouraging test results I have not experienced any symptoms other than the frequent urination I've had for years.

Tall_Allen profile image
Tall_Allen in reply to 3100connecticut

The standard of care for newly diagnosed metastatic PC would include abiraterone in addition to the Firmagon. Consider radiation of the prostate and the SI metastasis.

pcnrv.blogspot.com/2017/06/...

3100connecticut profile image
3100connecticut in reply to Tall_Allen

Thank you. Will definitely ask urologist about that on Friday.

3100connecticut profile image
3100connecticut

Thank you. Just curious, what do firmagon shots cost in the US (assuming that's where you are located). I haven't started yet but have been warned (here in Thailand) that it's very costly.

in reply to 3100connecticut

Initially four years ago I asked, my uro told me $10k for a one month shot ....

3100connecticut profile image
3100connecticut

Thanks much for your words on Firmagon. With my appointment tomorrow (Friday) for my initial shot I've been reading voraciously about this drug and am starting to wonder about it and my urologist, who told me I would be getting it every three months. But everything I've read indicates a double dose at first and a maintenance injection every month thereafter. I'm starting to wonder if this is really for me and whether I should just go with an orchiectomy (what scholar thought up such a fancy word for castration??) I notice you said you had one. How was it? In patient or out? Was the result the same as with the Firmagon? Nearing my 78 year mark my attachment to my testicles is purely sentimental. It would be like losing another old friend. At this point I'm really at a loss as to how to proceed, or if at all. Thanks again.

3100connecticut profile image
3100connecticut

...or orchid the flower, which Is what came to mind the first time I saw the word. It helps me remember the name, although your whale analogy seems more appropriate. I despise shots too, and the sudden realization that I was looking at one every 28 days and not every three months as I thought kind of threw me. Right now I'm still on the fence over whether to try firmagon for a month or two or to just say goodbye to my two old friends. Decision time is about 16 hours away and I've done more research tonight than I did in four years of college. A JAMA oncology study comparing orchiectomy with ADT over 36 months in 3295 men with metastatis prostate cancer showed the surgery patients had significantly less side effects, lower instances of bone fractures, peripheral arterial disease, heart-related stuff and diabetes, than those on ADT shots. Still have so many questions for the urologist who will be waiting for me with the needle. When I last saw him two days ago and made an appointment for the first firmagon shots he took blood to measure PSA and testosterone levels and I'll get those results when I seem him later today. I'm very curious to see if my PSA, measured at 14.8 three months ago, has gone up much or remained the same. The thing that's really bugging me is that, despite all the bad news I actually feel pretty good and have noticed no actual symptoms other the need to pee every 2-3 hours, which has been the case with me for at least 8-10 years. It's become kind of a running joke with my wife that when we're on a rode trip I have to turn into gas stations more often to deposit fluid than fill the tank. Still waiting for the other shoe to drop. Anyhow, thank you kindly for sharing your thoughts and experiences. They were truly helpful and encouraging. Take care.

Allen

shueswim profile image
shueswim

I've been on Firmagon since January '19 and previously had used Eligard a few years back. Firmagon has a few benefits compared to the other ADT drugs (no "flare", fewer cardiovascular events, etc.) but one that I've experienced is relatively fewer hot flashes. It doesn't make sense because the SE's should be directly related to the depressed T levels...but it's been a marked improvement.

The downside is that Firmagon is a monthly shot and more expensive. I've heard that they are working on 3 and 6 month options but right now I don't believe they exist. I've also read on this board about how painful the shots are but that hasn't been my experience.

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