Experience with lupron: Well brother I... - Advanced Prostate...

Advanced Prostate Cancer

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Experience with lupron

Startanew profile image
30 Replies

Well brother I was on lupron for about a year couldn't tolerate the side effects went on firmagon could not tolerate side effects finally went and had a orchiectomy it was the best thing I've ever had done don't have to deal with the pain and the side effects of the injections and the only thing I take now is xtandi

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Startanew
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30 Replies
Carlosbach profile image
Carlosbach

Thanks for sharing your experience. Your info is important.

After 2.5 years on Lupron my mental SE's were getting significantly more intense. After my last implant, almost 4 months ago, I felt like my mental health deteriorated to a point that life wasn't worth living, and I could not trust my judgement a lot of the time.

My MO is switching me to Firmagon (first injection next Wed). I'm hoping for some improvement on the MH. If not, I will pressure him for Orgovyx. He didn't want to prescribe it at this point due to the cost (for Kaiser, not my costs).

If those fail, I will also be lining up for a snip job.

in reply toCarlosbach

Are you Medicare Advantage?

Kaiser MOs dont care about med costs. I wanted to switch from Zityga ($112 mo cost to Kaiser) to Xtandi ($7,000 mo cost to Kaiser) she was totally fine with it, but I said I would wait due to MY cost.

Orgovyx is $1682 to Kaiser and your copay is $828

Firmagon and Orgoxyx do the same thing as Lupron.

in reply toCarlosbach

All of these solutions kill you testosterone. Lack of Testosterone is causing the SE

maley2711 profile image
maley2711 in reply toCarlosbach

Are you Kaiser Medicare Advantage plan? My ubderstanding they would be required to offer anything that traditional Medicare offers? Don't know if that applies to coverage under Medicare D plans?

GP24 profile image
GP24

Orchiectomy will cause the same side effects as Lupron or Firmagon. The side effects are caused by low testosterone.

Startanew profile image
Startanew in reply toGP24

I don't completely agree with you orchiectomy has been around for thousands of years these chemicals they're using to cause castration have only been around for maybe a hundred years and they still affect your liver and your kidneys wear I don't believe orchiectomy does

maggiedrum profile image
maggiedrum in reply toStartanew

It's certainly possible that the mental SE's are caused by other chemical reactions in the ADT meds of any type. I believe mine were definitely caused by no T. For years my mental health has fluctuated just like a woman with periods, i.e. monthly cycles of hormone changes. Unfortunately there hasn't been definitive research on this. However, I will not, ever, try any med that even might cause the severe, unending , SE I had from one ADT. I would, literally, rather die early from PCs than go through that again. I am living out that statement, or rather dying out that statement. At least I have an exponentially better QOL without the severe SE. I would have killed myself by now if I was still experiencing that. Any of you may doubt my histrionics and think I am being well over the top. All I can say I wish I could "assist" anyone who doubts me to go through it themselves and then tell me that again. I have long wished that my T had been measured through at least 4x monthly to compare the levels to my monthly depression. It has ruined my life but so far I haven't euthanized myself. A little brutal honesty here.

GP24 profile image
GP24 in reply toStartanew

The lupron prescribing Information do not mention side effects in regard to liver or kidneys.

maley2711 profile image
maley2711 in reply toGP24

Is that what studies have shown? Yes, low testosterone is a huge driver of these SEs, but isn't it possible that these castration drugs have their own set of SEs????

addicted2cycling profile image
addicted2cycling in reply toGP24

My Orchiectomy was 8 years ago and I NEVER suffered certain SE's many men speak about who get CHEMICALS put into their body and then have them stop after discontinuing the drugs and getting castrated.

Orchiotemy has not been around for thousands of years for PCA.

The church needed castratis to sing as sopranos and contraltos

gsun profile image
gsun in reply to

The Romans used to castrate the servants of the women of royalty.

in reply togsun

So were sexual predators!

Boywonder56 profile image
Boywonder56

Guilted them to geldings..........

London441 profile image
London441

Glad you’re happy with the result. Could be largely placebo effect. Orchiectomy is seen as a solution for some, but side effects are driven by low testosterone regardless of how it’s achieved.

Other than pain from injections what are the predominant side effects you’ve been freed from?

Startanew profile image
Startanew in reply toLondon441

My understanding is that there's less cardiovascular problems and there's less problems with your bones with an orchiectomy

London441 profile image
London441 in reply toStartanew

For some im sure, but my question was about the difference in side effects.

gsun profile image
gsun in reply toLondon441

Those are side effects.

London441 profile image
London441 in reply togsun

They are possible consequences, not side effects. The OP (Startanew) said he ‘couldn’t tolerate the side effects’. He seems almost certainly to mean not tolerating T suppression symptoms. Maybe he can tell us.

It’s possible he instead means he couldn’t tolerate that Lupron was making him osteoporotic and/or giving him heart disease. Doubtful, and of course these would have likely been pre existing anyway, thus only exacerbated by the Lupron.

Again, he may be saying that he developed CV issues or bone thinning on ADT which he found ‘intolerable’, but it’s not likely since those are not generally symptomatic until they result in serious problems later.

austinsurvivor profile image
austinsurvivor

switched from Lupton to Orgovyx 2 1/2 years ago and side effects are greatly reduced….at least for me. My BCBS policy pays 100% also.

SteveTheJ profile image
SteveTheJ

That's your experience and I believe you but many others of us find the side effects of lupron tolerable. You have to do what's right for you. But whatever the case, have courage and don't assume the side effects will be that bad.

David20451 profile image
David20451

Hated Lupron and its side effects. Have been on Xtandi as a mono-therapy for over 8 years. Of course every case is different. Best of luck.

lowT163 profile image
lowT163

my neighbor a fellow prostate cancer buddy had his orchiectomy and is way happier. Didn’t discuss why but he had the shots for a few years.

GummyToad profile image
GummyToad

Some people do well with no balls...Catlyn Jenner for example. It's not a decision you should push onto others though.

Startanew profile image
Startanew in reply toGummyToad

I would never push my decision on anybody else I had to do a lot of soul searching and a lot of discussion with my doctor to come up with my decision to do what I did everybody has to make their own decision for their own life we are all different what works for me doesn't necessarily work for anybody else but I'm glad the options was there being between a rock and a hard place it was the best decision for me and me only

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

Just think,,,,,,, no more getting them in an uproar............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/28/2023 8:14 PM DST

cancerfox profile image
cancerfox

Eunuchs were employed in the Emperors' courts in China for over 2000 years. Not only were their testicles removed, but also their wangs. 😃 🦊

j-o-h-n profile image
j-o-h-n in reply tocancerfox

Sad no more fun, can't test their testies or wing their wangs.....😃 🦊

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/29/2023 11:11 PM DST

Teacherdude72 profile image
Teacherdude72

Just curious: what side effects exactly?

ShenStone profile image
ShenStone

I have been on Lupron continuously for 24 years. I have a good life.

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