Urologist Wants to switch from Firmag... - Advanced Prostate...

Advanced Prostate Cancer

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Urologist Wants to switch from Firmagon & Nubeqa to Lupron with Nubeqa

Rcole727 profile image
Rcole727
β€’33 Replies

The urologist started with first injection of Firmagon with Nubeqa and before the end of 28 days wants to switch from Firmagon to Lupron with Nubeqa. I was under impression that Firmagon is better at getting the job done than Lupron? Why switch?

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Rcole727 profile image
Rcole727
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33 Replies
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Derf4223 profile image
Derf4223

@Rcole727 Your bio has no case details. Suggest you put more meat on that bone.

As for your posting,

1, Do you have advanced PCa? If so you are wasting your time with just a urologist. Most folks on this site have both a Medical Oncologist and Radiation Oncologist.

2, You absolutely must read up on trials relevant to your case. LATITUDE, CHARTED, PEACE-1 .. PEACE-3, etc. Jot down key findings and questions relevant to your case and discuss with your MO or RO. If you don't they are likely to treat you like a dodderer or google-head. Use their language and cite trials and the quality of conversations will be exponentially higher.

3, If not exercising the right way in the right quantities, start today. Lots of info on that topic on this site.

Rcole727 profile image
Rcole727β€’ in reply toDerf4223

Yes,, diagnosed with Mets in Bone and pelvic lymph nodes. 73 yrs old in good health. I have an MO who ordered Germline Braca testing and prescribed Nubeqa.

Rcole727 profile image
Rcole727β€’ in reply toRcole727

Also no Radiation Oncologist as I was treated in 2009 with Proton radiation at MD Anderson.

Tall_Allen profile image
Tall_Allen

Firmagon and Lupron do the same thing - they stop you producing testosterone.

Rcole727 profile image
Rcole727β€’ in reply toTall_Allen

Isn't Firmagon a better drug doing the same thing as Lupron, but without cardiac issues that can be found using Lupron? I mention this because I had an aortic valve and root replacement 2 years ago and am concerned.

Tall_Allen profile image
Tall_Allenβ€’ in reply toRcole727

Possibly - worth consulting with a cardiologist.

Rcole727 profile image
Rcole727β€’ in reply toTall_Allen

Thats what Im doing.

JohnInTheMiddle profile image
JohnInTheMiddle

Your urologist is probably recommending Lupron because it's more convenient. You can go 3 months are you in 6 months between injections. A few days ago I just had my usual 28-day Firmagon injection. Not too bad.

And as TA mentioned, they do of course do the same thing. I like to highlight though that they do it in a slightly different way. Lupron is an "agonist", for whatever needs to be agonized πŸ˜‚. Whereas Firmagon is a different injectable technology; it is an "antagonist" of the same thing.

I turned down the opportunity to "switch for convenience", based on reading a lot of things seemingly along the lines of what you are suggesting. There probably isn't a gold standard of evidence yet for choosing one or the other (except at the beginning).

Rcole727 profile image
Rcole727β€’ in reply toJohnInTheMiddle

Thanks for your insights. Cost is probably a factor, too.

JohnInTheMiddle profile image
JohnInTheMiddleβ€’ in reply toRcole727

That's an interesting question Rcole. I was thinking you were suggesting that Lupron was less expensive. But a quick check shows the opposite. Firmagon apparently works out to be overall less expensive per month than Lupron. I didn't check the generic versions.

Rcole727 profile image
Rcole727β€’ in reply toJohnInTheMiddle

I am surprised. I was thinking it was a newer therefore more expensive drug like Nubeqa which retails for 1 year supply $15k+/year.

JohnInTheMiddle profile image
JohnInTheMiddle

OK ADT (in our discussion here Lupron and Firmagon) has been around for decades. Lupron was apparently introduced in 1985. They're the basic backbone of PCa testosterone suppression. Most of us get some kind of ADT, and many of us forever. Then to get full-on doublet therapy you had things like Nubeqa (Darolutamide), which as you point out are crazy expensive (and often very successful). You could say ADT itself is kind of boring πŸ˜ƒ

j-o-h-n profile image
j-o-h-n

I used to be on Casodex and Lupron.........My main man took me off Casodex and now I'm on Lupron and Nubeqa. I guess there was a "switch over" P.A. announcement in the Cafeteria, that we missed.

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

Thank you.

j-o-h-n profile image
j-o-h-n

You 're welcome........ and keep posting, this is a great site...

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

Received first injection of Firmagon today....not too bad. Nubeqa starts tomorrow and then the SE parade starts shortly, not looking forward to that.

JohnInTheMiddle profile image
JohnInTheMiddleβ€’ in reply toRcole727

I hope your first Firmagon injection Rcole went well - you're probably having a second one very shortly? Usually two loading doses at the beginning.

I get side effects which seem to be comparatively minimal - about 8 hours after the injection I get shivers and feel ill and sometimes sleep for 14 hours with a lot of blankets on me. And then I feel very tired for 36 to 48 hours, but that's about it.

The injection site is what a lot of people on Firmagon have trouble with. I found it not really an issue if you have a skilled nurse. Injection instructions are very very specific. And I have had some really crummy injection site and overall body reactions a few times. I have managed now to always have the same very experienced nurse do the injection and this is made a huge positive difference.

A big success for you!

Rcole727 profile image
Rcole727β€’ in reply toJohnInTheMiddle

Thanks for all your encouragement very much appreciated and needed. The nurse injected Firmagon 2x as you observed to load up. She was good as I had no real pain.Today the injection sites are hurting/midly swollen but manageable. Didn't have any other reactions to the injections-YET! Although at work I was a bit fatigued in the am.

JohnInTheMiddle profile image
JohnInTheMiddleβ€’ in reply toRcole727

Well done! πŸ˜ƒ

j-o-h-n profile image
j-o-h-n

My Nubeqa instructions were two pills at AM and two at PM with food (and not to miss any schedule). BTW you can always trade in a bottle for a 2025 Mercedes convertible....

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

LMAO, maybe I'll put it on EBAY!

j-o-h-n profile image
j-o-h-nβ€’ in reply toRcole727

LOL

Now you're playing on my team.... welcome and take a seat on the bench..

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

Thank you, I'm in good company!

j-o-h-n profile image
j-o-h-nβ€’ in reply toRcole727

So am I..........Take the on-deck circle.....

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

My pleasure...out of curiosity how long after starting Firmagon did you start to experience SE?Did the Nubeqa cause any other SE apart from the Firmagon?

Thanks!

j-o-h-n profile image
j-o-h-nβ€’ in reply toRcole727

No side effects from the Nubeqa. So far I have never been on Firmagon, I have always been on Lupron and Casodex . The Casodex was replaced by Nubeqa in April 2023. So you could say that I was always on Firmagone.

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

Oh, mistaken....then as to Lupron did you have any SE's and if so how long after you started the injections did you first see SE and what were they?Thanks again.

j-o-h-n profile image
j-o-h-nβ€’ in reply toRcole727

Those Lupron (and Casodex) side effects creep up on you little by little and are not noticeable until they are noticeable.

Good Luck, Good Health and Good Humor.

j-o-h-n

Rcole727 profile image
Rcole727β€’ in reply toj-o-h-n

Thanks, Ill be on the lookout.

JohnInTheMiddle profile image
JohnInTheMiddleβ€’ in reply toj-o-h-n

One of your best j-o-h-n πŸ˜‚πŸΎ

P.S. - Referring to the Mercedes item πŸ™‚

j-o-h-n profile image
j-o-h-nβ€’ in reply toJohnInTheMiddle

Thank you.... Like the saying goes............. there's no end to being in the middle....

Good Luck, Good Health and Good Humor.

j-o-h-n

PARKER3237 profile image
PARKER3237

Just a quick question but why did you stick with the urologist and not seek a medical oncologist or other specialist? When I was found to have cancer with metastasized to the bone; my urologist wanted me to be treated by his partner. I said no way and immediately found an oncologist. They are the experts on cancer treatments when you look at the prostate and beyond!

Rcole727 profile image
Rcole727β€’ in reply toPARKER3237

I am being treated by both MO and Urologist, who in fact advised I must have an MO. When I first was diagnosed in 2009 with PC I was treated by a radiation oncologist at MD Anderson when PC was encapsulated and was treated with proton radiation.

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