Wondering what's after lupron - Advanced Prostate...

Advanced Prostate Cancer

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Wondering what's after lupron

Hvacman profile image
36 Replies

So , how many times do most people do lupron before it stops working?

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Hvacman profile image
Hvacman
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36 Replies
FCoffey profile image
FCoffey

Mean time to failure is about 2 years. Which means it stops working in a large fraction of men in less than 2 years.

Hvacman profile image
Hvacman in reply to FCoffey

I've taken the 6 mnt shot 3 times over 5 years. 2 mnts left on this one. I'm wondering when I take it again, will it work.

FCoffey profile image
FCoffey in reply to Hvacman

So it is working for you. That's great! You aren't in the group where it fails in less than 2 years.

There's no way to predict when it will stop working for you. I hope it is never; there are many men alive today who have been on it for 10 years or more.

Hvacman profile image
Hvacman in reply to FCoffey

Great, thanks for the reply.

Hvacman profile image
Hvacman in reply to FCoffey

Thanks for the reply. That makes me feel better 😁

dockam profile image
dockam

Hello, I did 30 months of Lupron/Casodex and last shot was 03/31/2017. I wanted to let the T rise and not go resistant. Also did 15 Taxotere sessions in 2015 and got to a nadir of 0.2 in 2016 and then another nadir of 0.1 after getting to 0.5 in 2017.

PSA now at 4.1 after getting to 6.3 - did 150mg/day of Casodex. New MedOnc said to stop that and see the results and maybe gonna restart Lupron.

Fight on Brothers

Hvacman profile image
Hvacman in reply to dockam

Thanks for the reply, brother.

I let my psa get to 133 before lupron. This time. 5 mnts later I'm at 23.

Hazard profile image
Hazard

I started Zolodex in May 2017. MO said that PSA would go to 0.1. At first check up 3 months later PSA was 2.5. That should have been a red flag to MO but he said come back in 3 months. At 2nd check up, PSA was 15. I am one of the unlucky men with primary ADT resistance. 2 years might be an average but I expect that there there is a very wide standard deviation.

BigRich profile image
BigRich in reply to Hazard

Lupron failed me n 2 months, We added Zytiga and Prednisone to Lupron, the combination is working. Initially, the doctor said we will work hard to get you 5 more years, that was 20 years ago. I am blessed. You are a statistic of one. My father said he never found an atheist in a foxhole. Get good doctors, read all you can about the disease,and have hope. I hope, to go another five to seven years.

I have Hypertension,A-Fib,kidney disease,diabetes, and prostate cancer, stage 4, and I am enjoying life.

He never promised you a smooth journey, only a safe port.

Don't give up.

God Bless,

Rich

billyboy3 profile image
billyboy3 in reply to BigRich

what was the dosage of each etc. time taken, number of times a day etc. tks.

BigRich profile image
BigRich in reply to billyboy3

Lupron, monthly injection, 7.5 mg.,Zytiga, 1000 mg. per day, all at once, Prednisone 5 mg. in morning, another 5 mg. in evening.

Rich

Hvacman profile image
Hvacman in reply to Hazard

So. I guess we just keep digging till we find something that works? Keep up posted.

Haliday profile image
Haliday

Nick is on his third hormone holiday in 5 years. I count 12, 3-month Lupron shots punctuated by 2 HT holdays of 6-7 months. He is working on bringing the average up, that is for sure! Diagnosed in July of 2013, Lupron and Casodex started in December 2013 when the found small sacral lesion. Good luck.

Hvacman profile image
Hvacman in reply to Haliday

How fast and how much does his psa climb in between lupron shots?

DenDoc profile image
DenDoc

I have been on Lupron continuously for the past 10 years. It had kept my mets under control until 11 months ago. Mets advanced until 6 months ago when a biopsy showed that my PCa had morphed to a neuroendocrine/small cell cancer. Currently on chemo for that but there is some PCa activity since my PSA is rising even on Lupron and chemo.

My data is in my summary on my home page.

No one can predict who will respond to Lupron.

Litlerny profile image
Litlerny

I’ve been on Lupron + Bicalutamide for over 3 years now. Also did a 6 cycle course of docetaxel earlier this year as an adjunct. As of 7/13/18 my PSA still undetectable, Testosterone 7-8, and bone scan showed interval resolution of my one pelvic tumor and no new tumors. Very 😃 happy and very blessed 🙏.

But, how long all this works in any individual patient is anybody’s guess and highly variable as noted in other replies. I’m hoping mine is like DenDoc and lasts 9-10 years, when even more new drugs and secondary treatment modalities are available once I become castrate resistant.

My UCSF oncologist seems to be telling me there is no after Lupron--I need to keep getting it indefinitely. I don't know whether he thinks that is true generally or just in my specific Stage IV presentation.

Tjc1 profile image
Tjc1 in reply to

Fire him there is Zytiga or Xtandi. Also chemo. And many more.

JoelT profile image
JoelT in reply to

Lupron will be with you forever even after you have become castrate resistant. When you become resistant you will add other drugs to the Lupron.

Joel

in reply to JoelT

I've been on Zytiga for more than 2 years, and have also had 2 rounds of radiation to the most obvious bone met. My understanding is that Lupron might be helping to keep my lung mets stable. Chemo is problematic for me for logistic reasons--I live too far from San Francisco and UCSF won't provide an order for chemo to be administered at a remote location.

efsculpt profile image
efsculpt in reply to

Is there a hospital near you with infusion center and oncologists? You could see a local oncologist with local hospital association and have your UCSF oncologist coordinate with him/her. Stanford does that where we live, 313 miles north.

in reply to efsculpt

Our local hospital (Bishop CA) has an infusion center but there is no oncologist in the entire county--nearest one is 100 miles to the north or south. UCSF seems to be less flexible than Stanford.

in reply to JoelT

Yep, been on lupron for 13 years. Addition of Xtandi and Xgeva 6 months ago after discovery of met 12 months ago. Hang on, it's a long ride.

Cmdrdata profile image
Cmdrdata

In my case, about 4 years (2013-2017).

Jackpine profile image
Jackpine

I’ve been on Lupron for 25 months and will be at my oncologist today. My PSA quadrupled in the last 2 months so I expect I’m done with Lupron.

in reply to Jackpine

Don't think so but maybe. Good Luck.

CalBear74 profile image
CalBear74

I started on Eligard(i.e., Lupron) as a Gl 8, stage 4 patient with Casodex in November 2012. My AZ urologist believed in 6 month intermittent scheduling. I continued doing that until August, 2016. We moved to FL and my urologist dropped the Casodex and administers Lupron continuously in a six month shot. I am still getting good results. I should add that I have been on heavy doses of IP6 daily and several other natural supplements. I also started a natural immunomodulation program with beta glucan (Transfer Point) in 2017. One nighttime dose of 1.500 milligrams combined with resveratrol and vitamin C per Dr. Vaclav Vetvicka's protocol (Univ. of Louisville Medical School). Is any of this affecting the longevity of Lupron? I haven't a clue. Does it have any synergistic relationships with any of my supplements? Again I don't know. Last visit to the urologist in March resulted in a 0.06 PSA, the same as Sept. 2017.

vandy69 profile image
vandy69

Good Monday Morning Hvacman,

I have been in this battle for almost six years (please see bio for complete treatment history).

For that entire time, I have been on either Lupron, Firmagon, or Trelstar, through both radiation and chemo.

Like another respondent, for me, there has been no time without a T suppressor.

Best wishes. Never Give In.

Mark, Atlanta

Tjc1 profile image
Tjc1

7 1/2 years before luprn failed me. Now on Xtandi also. Psa at .04.

TinCanDel profile image
TinCanDel

I have been on Lupron and now off. Diagnosed 2009. Now Stage 4 spine & lymph nodes. 5/2015 psa 37.7. Began Lupron 6/2015 on every 6 months basis. By 8/20015 psa at <.0 undetectable. 7/2017 stopped Lupron, based on VA Docs rationale: Tolerated medication fairly well, osteoporosis & spin stenosis worsened during the Lupron treatment and I would reach age 80 in 11/2017. Even with Parkinson's, I live an active life style (6 days per wk at the gym- my routine 1 hour on treadmill +1/2 hr strength machines). Had a psa every 90 days (Jan 2018= 0.1; Apr=0.3 & Jul=0.7). Current plan of action: psa every 6 months and let psa rise to 10.0 and then resume Lupron. A side note: My wife has been diagnosed with Alzheimer's. I am her only care giver, with out the Lupron side affects, I will better be able to attend to her needs. Let's not get so caught up in our prostate cancer, that we are distracts from living life to the fullest. In Oct, we are going on a Caribbean cruise to celebrate my wife's 80th birthday. If you are still "here" life is good

Break60 profile image
Break60

I was on intermittent lupron or trelstar for three rounds: from 6/14-12/14; 9/15-10/16; and 5/17-6/18. My second and third rounds of ADT treatments included bicalutamide and avodart ( triple blockade). If it’s up i guess I’m castrate resistant. So pretty good run.

Bob

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

to Hvacman: to answer your question, I just picked out of a hat and the answer is "hatband". Hatband? WTF?

Good Luck and Good Health.

j-o-h-n Monday 07/23/2018 12:46 PM EDT

arizonablue profile image
arizonablue

Been on triple hormone blockade includingLupron since 2008 with off vacations between 9 and 12 months, still working this far

Joeym1040 profile image
Joeym1040

Been on a year, off a year (lupron + casodex) since Oct 2011 when I had recurrance. Keep my fingers crossed every blood test. I am blessed. Good luck, still lots of options.

Olman profile image
Olman

Keep the faith Hvacman! I’ve been on Lupron more than 15 years with nothing else. Just got PSA test results of 4.5 and holding steady. I’d like 0.1, but will take what works for me. Get another PSA in three months and if it’s up, then a shot.

Hvacman profile image
Hvacman in reply to Olman

Wow , I hope I’m that lucky. I don’t take the Lupron in the summer. My last psa was 133. I just ended a 4 mnt shot.

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