Firmagon Vacation: Prostatectomy, 4... - Advanced Prostate...

Advanced Prostate Cancer

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Firmagon Vacation

epfj3333 profile image
24 Replies

Prostatectomy, 40 radiation treatments and 7 months Lupron in 2015. Gleason was 4+3=7. PSA was undetectable until 2020. Crept up to 7.3. Nothing showed up on PSMA and Axumin scans. Have been on Firmagon for 4 months now. My PSA went down to 0.064 within one week. I told my RO the symptoms were tough, hot flashes & fatigue. He called my MO and suggested we do the Firmagon every 6 months. The RO said it wouldn't change the effectiveness of the treatment. That confuses me. If it won't change the effectiveness of the treatment, then why didn't they do that in the first place instead of monthly Firmagon shots? I talk to the MO this Tuesday. I don't want to do anything that will cause the cancer, where ever it is, to flare up again. Can someone help me with this? Thanks.

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epfj3333 profile image
epfj3333
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24 Replies
Tall_Allen profile image
Tall_Allen

Firmagon is only available as monthly shots. Maybe he meant 6-month Lupron shots?

epfj3333 profile image
epfj3333 in reply toTall_Allen

No. He meant taking the "Firmagon" shot every 6 months. I asked him if that would change the effectiveness and he said it wouldn't. I think he might have been more concerned with easing my side effects but I don't want to do anything that will make the cancer spread. What questions should I as the MO on Tuesday? I go to the Florida Cancer Specialists in Naples, FL.

Tall_Allen profile image
Tall_Allen in reply toepfj3333

It's completely up to you if you want to risk vacations. You have to weigh your relief from side effects of ADT vs the risk of progression. Using Firmagon or Orgovyx maximizes the chance that your testosterone will resume and that you'll be able to feel the vacation. Will it progress in that time? It might, or it might not - trials were inconclusive and varied a lot across individuals. It's a personal decision.

epfj3333 profile image
epfj3333 in reply toTall_Allen

Thanks for that. I guess maybe he's thinking that since I got such quick results with one injection, wait 6 months and if the PSA starts creeping up again, hit it with another dose of Firmagon. Maybe also the cancer cells would not get used to the Firmagon and try to find a way to get around it. I guess if that was true I could just do nothing until the PSA started rising and then get another shot. I'm just concerned and confused and I don't want to do anything stupid. Does any of what I said make sense? I respect your opinion. I'll find out more when I talk to my MO on Tuesday. Thanks.

Tall_Allen profile image
Tall_Allen in reply toepfj3333

There's no SOC protocol for doing intermittent ADT (iADT). Some guys do a set time, some do it until the PSA hits some mark, some do it based on PSA doubling time, some do it based on testosterone levels and some minimum time at normal.

iADT has no effect on the time until castration resistance.

epfj3333 profile image
epfj3333 in reply toTall_Allen

Sorry to keep bothering you but this is really concerning to me. I don't want to do anything stupid. What would you do if you were in my situation?

Tall_Allen profile image
Tall_Allen in reply toepfj3333

Sorry, I can't answer that. I'm not in your situation, and it's not my body or my life. I know it's a difficult decision. But only you can answer that for yourself.

dhccpa profile image
dhccpa in reply toepfj3333

Maybe you could test the PSA level monthly during the vacation. Or semi-monthly.

naples2021 profile image
naples2021 in reply toepfj3333

Who is you doctor ? My father also lives in Naples and is a patient of dr. Newman

epfj3333 profile image
epfj3333 in reply tonaples2021

My RO is Bruce Nakfoor at Inspire Oncology and my MO is Doug Heldreth at Florida Cancer Specialists.

Magnus1964 profile image
Magnus1964

If firmagon is giving you bad side effects maybe you should switch to another drug.

E2-Guy profile image
E2-Guy in reply toMagnus1964

I personally am a big fan of the Oestrogel (tE2) gel that I have been using for 46 months! ONLY SE is little boobies. Richard Wassersug has been using it for over 20 years and still has an undetectable PSA.

x-rays1 profile image
x-rays1 in reply toE2-Guy

I’m interested in your experience of Oestrogel. I had not heard of it before. I see it’s Hormone Replacement Therapy. So it’s not used for prostate cancer, is it? How long have you been using it and what is it doing for you. Quite interested as I am due to go back on Hormone treatment soon and dreading it.

E2-Guy profile image
E2-Guy in reply tox-rays1

Bro, I have numerous posts on my profile page describing my use and results of this transdermal estradiol gel. It 'hormonally' (it is made from soy and yams) castrates a man as opposed to chemical castration such as Lupron. My PSA has been in the 'undetectable' range for 3-1/2 years and I feel totally normal. Please check out my posts and message me if you have additional questions.

epfj3333 profile image
epfj3333

My RO is Bruce Nakfoor at Inspire Oncology and my MO is Doug Heldreth at Florida Cancer Specialists.

JRPnSD profile image
JRPnSD

My PSA went to Undetectable with 2 weeks after the first Firmagon injection....but no one ever suggested that I stop doing the ADT treatment because it worked so quickly. Something does not make sense in the treatment plan you report. I switched to Relugolix pills due to the pain of the injections, but still on ADT.

in reply toJRPnSD

Me too! My first one month shot of firmagon put me undetectable ! Thanks Firmagon . Very lucky indeed! Now I’m over six years clear and wondering if the the pendulum will swing low and chop of my head off any time soon ? I really don’t wish it upon myself or anyone else . But it is the nature of the beast . Do we all have this ticking time bomb inside? Yes indeed! I did the orch and I’m still taking pills too . 😳Live for today ! 🙏

London441 profile image
London441

The only difference in side effects between the drugs for most is pain at the injection site for the monthly firmagon and not usually for Lupron Eligard etc. Any perceived difference is nearly always placebo effect. This is simply because tge drugs all do the same thing-suppress testosterone. This is what is causing the side effects, not which drug you take.

It is true that Orgovyx clears more quickly.

I have never heard of monthly Firmagon shots being given every 6 months but it doesn’t sound good. I would either be on the drug or off it. It takes considerable time for it to clear your system as it is without trying to taper or employ a partial dose, and almost surely won’t work as well while you’re doing it.

How much do you exercise and what kind? You can kill those sides with it. It’s always your best option for handling the side effects, and for quality of life in general.

Boonster profile image
Boonster

Maybe the question you are struggling with is this: which path might lead to a cure and which path is palliative in intent or effect. Is iADT the latter, a path taken to provide some temporary improvement in quality of life? Is that what you want?

MateoBeach profile image
MateoBeach

Firmagon can actually maintain castrate T level for longer than a month. I had one shot of 120 mg Firmagon to start adjuvant to RT and just followed my T levels along with PSA monitoring. For me, the shot kept me castrate until three months, meaning monthly shots were unnecessary. You could follow Testosterone levels every two weeks until it rises above your target threshold (whether 20 or even 10 ng/dL). Then you will know how long to go between injections.Your side effects of hot flushes and fatigue will probably still be there though. A low dose estradiol patch can help with these greatly. Make life on ADT much more tolerable.

epfj3333 profile image
epfj3333 in reply toMateoBeach

Thanks. I think the best answer is to stay on the once a month schedule. It's working. I can live with the hot flashes and fatigue everywhere except the golf course. That might sound like a big deal except that I'm a professional golfer! I can't play golf anymore since I started the ADT treatment. I try but I haven't been able to complete a round.

in reply toepfj3333

I can completely relate . I Got taken down hard my first two years . I had tubes out of my back and went on disability at 53 . That was in the handbook . I was switched to Lupron tri monthly after my first shot of firmagon .. I disliked the tri monthly lupron shots so much that I did the orch .. but monthly is a royal pain in the ass . Get on tri monthly . Good luck

GeorgesCalvez profile image
GeorgesCalvez

They did an experiment with sex offenders in which they gave them a shot of Firmagon every three or four months over a couple of years and that was sufficient to keep them adequately castrate.

I suspect that you could do one shot every six weeks or maybe two months and in the vast majority of cases they would never rise above the castrate level, but where would be the money in that?

Hello Sir! I too got treated in 2015 . I was beyond surgery gl 8 but t-4 .. I did imrt ,Lupron for 18 months with tak -700 a test adt drug I’m still on today . I stopped tri monthly Lupron shots with an orchiectomy in 2017 . I went clear in the first yr . I’m now 60 . 5 yrs with 7 months Lupron was good . I don’t get the vacation aspect . It’s never been offered to me . After #4 APC I’d rather not see my Psa ever again . I suffer the hypogonadism = no.T . I’m a eunuch so I value life itself and no cancer over t . With adt we all suffer . Pc gone wild is more suffering . IMHO . Good luck with whatever you choose! 🏋🏽‍♂️

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