Lupron : Just wondering if anyone has... - Advanced Prostate...

Advanced Prostate Cancer

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Lupron

nextphase profile image
41 Replies

Just wondering if anyone has been on lupron for the long hall I mean like five years or more? I have been on this now for 18 months outside of the normal side effects it seems to be working. Thanks

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nextphase
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41 Replies
RyderLake2 profile image
RyderLake2

Hello,

I have been on Lupron (Zoladex) for nine years and seven months. I added Xtandi (enzalutamide) to the mix five and a half years ago. Recently, as part of a clinical trial, I dropped Xtandi and am now taking Zoladex and Zytiga (abiraterone). I have never been off Zoladex since diagnosis. Hope that helps!

nextphase profile image
nextphase in reply toRyderLake2

Thanks for the info. Still on lupron for now. We also had our 50th this year. Thanks

EdBacon profile image
EdBacon

Over 6 years.

MJCA profile image
MJCA

Hi -

This round I have now been on Lupron 5 years. I was deemed hormone resistant at that time. Even though one is taking the next generation of androgen receptors such as Nubeqa, Xtandi or Zytiga, one must continue with Lupron/Eligard.

nextphase profile image
nextphase in reply toMJCA

Thank you sounds like it's working.

Kaliber profile image
Kaliber

just over 4 years , still working great.

westof profile image
westof in reply toKaliber

Hmm... Keep on "Truckin'" Brother K !!🥂

Boywonder56 profile image
Boywonder56

Working on 7 lupron/eligard/erleada.....qol...5.9/10.....fk cancer

dockam profile image
dockam

Started ADT with Lupron in 01/2015, had an 18 month 'Hormone Holiday" from 03/27/2017 (PSA @ 0.4) to 12/14/2018 (PSA @10.2) Restarted Lupron, PSA hit 3.9 then started going back up. PSA hit 11.7, then Zytiga, and Xtandi both failed in 2020 :-(

I'm Castrate resistant, MO tried a 6 Taxotere rechallenge in 2020 (Had 15 in 2015) and that failed too

Have osteopenia diagnosed with DEXA in 2021. On Vit D, Calcium and Magnesium.

Do three workouts/day with weight bearing exercises. No heart issues, some depression, & muscle atrophy. Not much fat gain, I weigh 141ibs, BMI @ 20.6 with body fat at 9.4%

Cardio/Weights will offset most of the Lupron side effects. I also do 16 hr Intermittent Fasting

"I'm still standing better than I ever did?

Looking like a true survivor, feeling like a little kid" Elton John

Fight on, Exercise on

Randy

nextphase profile image
nextphase in reply todockam

Thank you for sharing that. Yes everything your doing is great. I'm the same only working out 3 days a week two hours .thanks

bluepacifica profile image
bluepacifica

My husband was diagnosed in 2004 and first Lupron shot in February 2005. He's been on the 6 month dosage with no breaks. PSA still at zero. He's stage IV and Gleason 10.

bean1008 profile image
bean1008 in reply tobluepacifica

that is fantastic! I’m at two years Lupron/Zytiga next month.

garythomas profile image
garythomas

I have been on Lupron for nine years.

Scottybear profile image
Scottybear

did one year and that's it.... G9 with a small rib met. PSA has leveled at .50 2 yrs post radiation as well.

leebeth profile image
leebeth

My brother has been on Lupron for 13 years. He had hot flashes in the first few months but no other significant side effects.

EdBar profile image
EdBar

it’ll be 9 years in March for me.

Ed

nextphase profile image
nextphase in reply toEdBar

Thanks for sharing this. Going for labs and next shot on Tuesday. Stay strong . It's great to hear these journeys that we are all on. Thanks again.

leo2634 profile image
leo2634

Zytiga, Eligard 5 years. Provenge infusions June 2019 . PSA 0.1 since first month treatment.

nextphase profile image
nextphase in reply toleo2634

Thank you sounds like you are doing well and on the right track. I go in this Tuesday for labs and my next lupron shot. Hoping as we all do that the PSA stays at bay. Stay strong!

pakb profile image
pakb

My husband has been on Lupron, ADT, since August 2017. Hot flashes were worse in the beginning. He's also been on other treatments with ADT. In my profile.

nextphase profile image
nextphase in reply topakb

Wow, he has been through a lot of treatments. I'm glad he doing better. Thanks for sharing.

pakb profile image
pakb in reply tonextphase

He's doing very well- hoping the same for you!

Chugach profile image
Chugach

I’m six 1/2 years on lupron. I’m alive and doing fine.

dhccpa profile image
dhccpa in reply toChugach

Anything besides Lupron for PCa?

Chugach profile image
Chugach in reply todhccpa

Every kind of SOC you can think of

nextphase profile image
nextphase in reply toChugach

Wow just read your Bio. What a journey for you and your family. I can't imagine how frustrating all of that must have been. I've been on this train for 15 years but my story is mild compared to what you've been through. Thanks for sharing stay strong.

dhccpa profile image
dhccpa

Just crossed four years on Lupron only (besides Prolia for bones). I suspect most who answer have also been on something in addition to Lupron.

Chadsdad profile image
Chadsdad

Great informational post. Been doing Erleada/Eligard for 3 years. Fatigue and muscle loss have been a concern. Not awful just wondering if it’s gonna get worse. I just turned 67 and not sure how much energy I’m supposed to have. I have maintained a 0 PSA for these last 3 years so there’s that.

Yank66 profile image
Yank66

Almost 9 years. The first 5 were progression free (after surgery and radiation). Lupron for life since.

nextphase profile image
nextphase

Yes sir going on 15 years. I’m 71 I work out 3 days a week intensely. Summer it’s golf and bike and a lot of walking. I’ll see my OC on Tuesday along with my next shot of lupron. Will ask about a vacation but feel they don’t want the T to fan the flames. Stay strong thanks.

Hailwood profile image
Hailwood

Just around 3 years, with no real issues so far

nextphase profile image
nextphase in reply toHailwood

Thank you glad that you are doing well.

maggiedrum profile image
maggiedrum

My older brother died this year at 94. Not from his long battle with PCa. He had been on Lupron for many years. His PSA was in the triple digits for a long time but the cancer never got that bad. He wasn't one to talk about his medical issues. That generation didn't do that much as a rule. When I asked him once about Lupron side effects he said "I still like girls".

nextphase profile image
nextphase in reply tomaggiedrum

Thank you for that information.

Miccoman profile image
Miccoman

I was on Lupron for 7 years and just had enough of the side effects. And, since my testes were totally atrophied and were not coming back in this lifetime, I had them removed and so no longer need Lupron. Anxiety: gone; hot flashes: gone; need for another injection: gone. QOL: much, much better. YMMV

bean1008 profile image
bean1008 in reply toMiccoman

micromanage, what happened to your psa number after stopping the Lupron? I’ve been on it two years and hate the fatigue….considering an orchidectomy as well.

gsun profile image
gsun in reply tobean1008

yes I would like to hear some details as well.

XYZdrugs profile image
XYZdrugs

Lupron, abiraterone, and prednisone for six years and doing ok

VOR87 profile image
VOR87

I have been on Lupron since December 2015. PSA remains non-detectable. I also did chemo (taxotere) when I started Lupron. I had my prostrate removed in January 2011 and proton radiation in 2013 when my psa started rising. Have decided to skip my next Lupron. Hope this is helpful.

nextphase profile image
nextphase in reply toVOR87

Thanks for that information. I'm coming up on two years now. Psa at 0.04 I feel lucky that so far outside of some hair loss and muscle loss I feel great. I feel that working out has alot to do with it. 15 years since my operation. Good luck to you and happy holidays.

VOR87 profile image
VOR87 in reply tonextphase

Glad to hear this. Hang in there.

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