Monthly Firmagon Shot

[epfj3333]

I had my monthly Firmagon shot today. September will be two years since I started Firmagon. My PSA went to undetectable and has stayed there. All scans have showed nothing. My MO said we'd continue Firmagon until September (that will have been two years) and then stop. We'll check my PSA every three months. He said if my PSA starts crepping up we will start the Firmagon again to know it back down. Does that sound like a good plan? TA, I'd appreciate your opinion. Thanks.

[Tall_Allen]

If you want a break, it's a good idea. But there are risks. It's up to you.

[epfj3333 in reply to Tall_Allen]

I've learned to live with the effects of lowT. The MO said it was no big deal to take a break. If my PSA shows up in three months he said I'd go back on Firmagon. I don't want to do anything that could aggrevate the cancer cells, wherever they are. My main concern is that if I keep taking Firmagon every month, the cancer cells may throw out more testosterone recepters and find a way to bypass the Firmagon and continue to spread. Does that make any sense? Thanks.

[Ahk1 in reply to epfj3333]

my MO stopped after 12 months and psa stayed undetectable for almost 15 months after stopping the Firmagon shots. Two days ago he said, we will wait untill psa is greater than or equal.2 and do a psma scan. I guess he will start Firmagon if things look bad.

[Concerned-wife in reply to Ahk1]

You must have had a prostectomy. apparently the value is 2.0 if a man had radiation, instead of surgery since he still has his prostate

[Tall_Allen in reply to epfj3333]

Castration resistance begins at the same time whether you take a break or not.

[Ahk1 in reply to Tall_Allen]

This is very disturbing news to me, TA. I wonder why would be the reason for continued therapy then? Many doctors now are following IADT approach. Is this an opnion/ observation studies or RCT? Thanks.

[Tall_Allen in reply to Ahk1]

It was a landmark RCT. Many men need a break from ADT.

[epfj3333 in reply to Tall_Allen]

Do they need a break because of the side effects or because it may "confuse" the cancer cells, discouraging them from finding a way to "get around" the ADT?

[Tall_Allen in reply to epfj3333]

As I said above: "Castration resistance begins at the same time whether you take a break or not."

[Boonster in reply to Tall_Allen]

TA, what are the risks you are thinking about? If castration resistance starts at the same time, whether or not you take a break, when does the resistance start? Thanks very much for your reply.

[Tall_Allen in reply to Boonster]

Risk of earlier death. In the landmark study, mortality increased 10% in those using iADT:

nejm.org/doi/full/10.1056/N...

[Ahk1 in reply to Tall_Allen]

TA, what do you think about the other opinion that says if you are heavily treated with adt for a long time , the cancer can mutate to a more aggressive kind like NEPC? Thanks.

[Tall_Allen in reply to Ahk1]

That occurs in a minority (17%) of heavily treated men. Even so, one gains more life by getting those treatments than by not getting them. Rahul Aggarwal, who discovered that said:

"“Although long term androgen deprivation therapy may be associated with the development of treatment-emergent small cell neuroendocrine prostate cancer (t-SCNC) in a minority of patients, multiple studies have confirmed the long-term benefit of abiraterone and enzalutamide for prostate cancer patients in various disease settings. Use of these agents should not be limited by concern for the subsequent development of t-SCNC.”

[Concerned-wife]

it appears the specialists are giving metastatic men vacations. It surprised us because it appears the studies such as Stampede were based on continuous treatment. I think perhaps they hope to find any reoccurring cancer with a scan and deal with it quickly. Meanwhile the man feels better. My husband is scheduled for a break soon. After consulting a leader in metastatic prostate cancer.

[VCinTx in reply to Concerned-wife]

I have taken a break and I am on TRT with very tiny increase in PSA in 8 months.

[Tall_Allen in reply to Concerned-wife]

The "specialists" should be giving men whatever they ask for, but they should also be frank about the risks.

[pakb]

What is your diagnosis? Mets? Gleason? I didn't see that in your bio. In my wives/caregivers groups I've read about many men taking 'breaks' lately being told they've done their '2 years'- which i thought was only for non-adv Pca? Maybe that's changed. Many of those men had same diagnosis as my husband (high gleason/mets) and some not. My husband's MO doesn't want to take that chance. I've been surprised at the number of men doing this lately who had an adv pca diagnosis- even if psa and scans look good. Since we don't know if there are micro mets out there. I've been trying to figure out why- it doesn't seem to be based on BAT. And it doesn't seem to be based on the level of SEs the men are having.

[Concerned-wife in reply to pakb]

same thoughts and questions here.

[Rolphs]

In May I'm 2 years since DX. Went from 930PSA to current .4 and probably at Nadir. On Firmagon, Xtandi and went through Docetaxel at onset. I asked my MO about vacation from ADT she said that it's risky and I'd better plan on being ADT for the rest of my life. Hope it doesn't come to that with all the SE's of ADT.

[Wahoo_]

I am in a similar situation, but seeing how my side effects are minimal, my MO and I have decided to not rock the boat as he put it and keep on with the treatment plan. I also take Xtandi daily.

[Hidden]

My first shot was a one month firmagon shot .Amazing really! I went undetectable and then switched to Lupron then an orchiectomy allowed me to drop the lupron . I did Lupron two years . I did another test adt drug( Tak-700) for over seven years quitting it too seven months ago . No mo ever recommended a vacation for me . I started off in really bad shape and no one wanted me to go back there again . Most long term vets here would say Dont stop the Adt if it working well! I’m devasted by no T . But no pc is a pleasure …. Whatever you choose , may it be the best for you ! 🙏

[j-o-h-n in reply to Hidden]

Nice to see you Lu.......I think you lost your humor in all the rain out there..........Don't be such a stick in the mud.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/15/2023 9:59 PM EST

[Hidden in reply to j-o-h-n]

Good to see you also ! ❤️

[Hidden in reply to j-o-h-n]

much of the humor has left this cite in your absence .

[j-o-h-n in reply to Hidden]

I'll try to restore it...........(requisition some cream pies)

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/16/2023 8:12 PM EST

[Hidden in reply to j-o-h-n]

you can do it!

[epfj3333 in reply to j-o-h-n]

I'm not sure who Lu is. Everybody's got me confused with someone else. I'm epfj3333. I keep getting these responses addressed to Lu on my personal email.

[j-o-h-n in reply to epfj3333]

epfj3333 in Roman Numerals = Lu

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 02/16/2023 10:01 PM EST

[carguy]

Hi,

I have to agree with TA on this one. I was on Firmagon, Zytiga/prednisone for 2 years and also was undetectable the entire time. I decided to take a vacation from the meds (with approval from my MO) and sure enough, my PSA started to creep up again. After going back on the ADT and Zytiga, I never returned to being undetectable. The PSA continued to increase up to 3.5 . Here I am, 2 years later now undergoing chemo. I often wonder if I hadn’t taken the vacation, would I still be undetectable? Who knows, everyone is different. My advice to you is if you can tolerate the ADT side effects, why stop? The vacation could cause more harm than good. My opinion only.

[Ahk1 in reply to carguy]

I agree with you but what do you think about the other opinion that says if you are heavily treated with adt for a long time , the cancer can mutate to a more aggressive kind like NEPC?

[carguy in reply to Ahk1]

That’s a good point and a good possibility that it may happen. It is possible that by taking the vacation, I was spared of NEPC which is very aggressive. You have to consider the pros and cons of each option. It’s like gambling! I wish you the best.

[ARIES29]

Gambling is a good word for taking vacations from ADT I think. I have been doing this since 2011, radiation, LU-177, on & off & PSA going up every time after a vacation from treatments. Recently on Firmagon & now Zoladex keeping it around 1 & I know if I have a vacation it will go up again, but how I long to return to normal, as we all do.