Stop Lupron?: I am tired of the side... - Advanced Prostate...

Advanced Prostate Cancer

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Stop Lupron?

pfeier
pfeier

I am tired of the side effects from Lupron. I have had two shots 6 mos apart and my doctor wants to do 2 more shots 6 mos apart. What is risk if I stop lupron? I was in high risk category but am now fine with low PSA numbers. Or should I go to intermittent hormone treatment. I have gained 20 lbs since second shot and am tired and weak.

19 Replies
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Every case is different. I stopped my 18 month Lupron plan at 9 months because of those side effects and the fact that I had Taxotere and radiation as “curative” treatments. After stopping Lupron, I had a “Lupron hangover” where it took 6+ months for my testosterone to get back to normal. I’m in remission with undetectable PSA 2.5 years later.

I would try one-month shots (or 3-month) before quitting all-together. Or try dropping the effective dose down by spacing the shots out longer. I'm doing one-month shots every 5 or 6-weeks. After a year on Lupron, it's kicking my ass with high levels of muscle soreness and some joint pain that's come out of nowhere. Stay with it if you can, the risk of stopping is having a recurrence earlier than if otherwise continued, but discuss with your Dr.

Kaliber
Kaliber in reply to timotur

I hear that brother ... got my next three month shot yesterday, getting every penny’s worth this morning ... yeehaw. Been on it 15 months .... I doubt anyone has any worse side effects than I do. For sure I’m right there in the top of the list with all the other “ severe “ guys. The longer I’m on it, the more difficult it seems to be. I wonder , sometimes, how I can keep on doing this. Still .. As the wifey likes to say , it’s better than the alternative and my psa has been in biochemical remission for 14 months. Says she’ll kick my a$$ if I even remotely think about quitting. Yayahahahaya

I agree with you brother ... stick with it if it’s working ... I’d feel a lot worse to see that psa skyrocket again. 👍👍👍

💪💪💪💪 peace brother

Here is an overview what you can do against the side effects:

prostatecanceruk.org/prosta...

Also low-dose estradiol patches will help a lot against most side effects.

On a scale of 1 to 10, where 10 is unbearable, where are you?

Richard Wassersug switched to high dase estradiol [E2] & is very happy with it. Other members here may have switched - perhaps they will respond. & there are others who started out with E2 who might comment too.

-Patrick

What do you call low PSA? What is the most recent PSA? I do not like 6 month shots, they load up the body--when one month shots are IMO preferred. I have suggested the Vantas Implant about 20 times on this HU site--for eliminating shots, and for much lower side effects.

Vacations are fine to do, but most Doctors, that suggest them for patients, want to see their patients with an undetectable PSA for many months in a row---from as low as 12/13 Months, to a high of 30 months. Mostly depends on the aggressiveness of the pathology---your Gleason, or having an unusual component to your pathology like ductal/intra-ductal.

There are a lot of evaluations to consider before a vacation, is appropriate.

Nalakrats

Is your ADT being done as an adjuvant to a primary therapy like radiation? If so, there is no benefit to more than 18 months.

If you've had a recurrence, then intermittent ADT is in order; it's not inferior to continuous, it delays castrate resistance, and it given you a break from the SEs.

As mentioned previously, high-dose transdermal estradiol is a relatively new approach, based on successful phase 3 trials in the UK. That's where I'm going if I need more ADT, insofar I was miserable beyond words (suicidal) the first time through.

I know this sucks. Best of luck.

You should talk to your doc (and maybe another) about the potential costs AND benefits of staying on ADT, and about the potential costs AND benefits of going off ADT.

The standard of care leans towards putting patients on a continuous longer-term treatment. You might wonder: is there a proven survival benefit for ALL men under the "more is better, longer is better" mode of treatment? No. Some men will absolutely benefit from it, but others may not. Trying to figure out which group YOU belong to may be difficult. (Knowing your Gleason, and scan results or other baseline info, will help.)

A small minority of doctors believe ADT is overused, and they believe some of its prolonged use is without conclusive evidence of a significant survival advantage. Can your doctor tell you how much longer he expects YOU to live by doing a two-year ADT over just a one-year ADT? (Ask him for references to the science that would show the benefit, if he believes one exists.)

We know two things will happen if you stay on ADT: 1) some aspects of health and quality of life will suffer, and 2) your PSA will likely remain pretty low. Having a low PSA does not mean you are cured or free of cancer, but keeping the PSA as low as possible means the progression of your cancer will be temporarily delayed. You need to weigh the possible benefit of that delay against the known cost of a lower QoL and other detrimental effects of ADT.

That is not advice on what to do. I can't put myself in your shoes. For myself, with a 3+4=7 and a few asymptomatic mets in the spine, I do not plan to stay on any course of ADT for much more than a year regardless of a doctor's advice. Nobody has yet convinced me that I get to live longer with continuous ADT. (And absent any symptoms or worrying scans, I will not let a slight rise in PSA alone dictate a resumption of treatment.)

13 months in with 11 to go; gained 30 lbs and have joint pain. Always feel better when I stay active. I will trudge on to the end hoping it will kill as many of the micro mets as possible and extend my survival. I am at Hopkins and my M.O. and R.O. both feel 2 years is the right amount of time needed to garner the best response. I am undetectable and expect to be that way at the end of my Lupron treatment. Hoping it will stay that way for a long time. Just trying to continue kicking the can down the road. Best Wishes!

You are posting on a site for advanced PC patients. It sounds like you only had high-risk PC for which you had radiation + adjuvant hormone therapy, so all the stuff you read on this site about ADT-vacations does not apply to your situation. They are on life-long ADT, you are not. You have to stay the course for about 28 months of ADT. Your PSA is low because of the ADT. Stopping and restarting may encourage resistant strains.

noahware
noahware in reply to Tall_Allen

I have not heard that stopping and restarting may encourage resistance, any more so than continuous ADT. If that's the case, then cADT is clearly better than iADT. But I have read that iADT may provide a better theoretical possibility of delaying hormone resistance. Am I missing something?

I was also under the impression that 18 mos of ADT was shown to not be inferior to 36 mos. What is the basis for suggesting a 28-mo course?

Tall_Allen
Tall_Allen in reply to noahware

"But I have read that iADT may provide a better theoretical possibility of delaying hormone resistance. Am I missing something?" "Theoretical" is not useful. Only clinical data should be used.

"I was also under the impression that 18 mos of ADT was shown to not be inferior to 36 mos. What is the basis for suggesting a 28-mo course?" The basis is DART 01/05.

noahware
noahware in reply to Tall_Allen

Okay, but what is the clinical data showing cADT is demonstrably better than iADT, regarding the possibility of delaying hormone resistance, as implied by your comment?

And doesn't DART just tell us that 28 months is better than 4 months of ADT? No surprise there. But RADAR tells us not only that 18 months is better than 6 months of ADT, but that it might be just as good as 36 months.

Tall_Allen
Tall_Allen in reply to noahware

I just replied to this here:

healthunlocked.com/advanced...

You are quite right that the info so far on the duration of adjuvant ADT does not zero in on a particular value. That's why NCCN provides a range of acceptable ADT (1.5-3 yrs). Here is what they say:

"Increasing evidence favors long-term over short-term neoadjuvant/concurrent/adjuvant ADT for patients with high- and very- high-risk disease. The RTOG 9202 trial included 1521 patients with T2c- T4 prostate cancer who received 4 months of ADT before and during EBRT.471 They were randomized to no further treatment or an additional 2 years of ADT. At 10 years, the long-term group was superior for all endpoints except OS. A subgroup analysis of patients with a Gleason score of 8 to 10 found an advantage in OS for long-term ADT at 10 years (32% vs. 45%, P = .0061). At a median follow-up of 19.6 years, long-term ADT was superior for all endpoints including OS in the entire cohort (12% relative reduction; P = .03).472

The EORTC 22961 trial also showed superior survival when 2.5 years of ADT were added to EBRT given with 6 months of ADT in 970 patients, most of whom had T2c-T3, N0 disease.473 The DART01/05 GICOR trial also reported similar results in men with high-risk disease.474 In a secondary analysis of RTOG 8531, which mandated lifelong ADT for patients with locally advanced prostate cancer treated with EBRT, those who adhered to the protocol had better survival than those who discontinued ADT within 5 years.475 Two randomized, phase 3 trials showed 1.5 years of ADT was not inferior to 3 years of ADT.476,477

A meta-analysis of data from 992 patients enrolled in 6 randomized controlled trials showed that a longer duration of ADT with EBRT benefited men with Grade Group 4 or 5 prostate cancer.478"

The duration is very much a judgment call. 18 months is a minimum, but it is reasonable to continue it longer based on other factors that emerged after those RCTs began (% pattern 5, PET scans, genomic analyses, cribriform, radiation dose, PNI, tolerability, etc.). My preference would be for 18 months with brachy boost therapy if a PET scan was negative, longer for other kinds of radiation or if a PET scan was positive.

Thank you. This information is very helpful. Just had my scans one year since diagnosis (had 6 weeks of Docetaxel &12 months of Lupron. Good news, my scans have no new growth and my PSA is .40, just up from .29. I see doc Mon. & requested 1 month Lurpon instead of the 3 month, to see if that will make a difference in the progressively worse side affects I've had & in hopes that when I take a "Lupron" holiday, getting one month residuals out of myself system is fasting than the 3 month. Initially cancer had not spread to lungs & liver, Gleason 7, PSA 126. I believe my doc is really pushing the continuation of the 3 month shots without ever addressing the possibility of taking a break, so I do as much research on Lurpon as I can in order to empower myself to make the best decision I can about taking a break. If my scans continue to be good and PSA down, 18 mos. is the longest I plan to be on this drug until I take a break, knowing the eventually I will be on it for life. Thanks again for your insight.

Seems I have been on Lupron forever. Had my eight 6 month injection recently. Back in early 2016 I went to MD Anderson for a consultation before starting radiation. I ended up with Dr. E and she was impressive. She stated I needed to be on Lupron the rest of my life.

I hate the side effects. It would be nice to have intercourse with my lovely wife again. All the other side effects also I hate.

Anyway, except for a few months after the radiation was completed, I have been on continuous Lupron.

The most frustrating thing to me is continuing Lupron as I’ve moved on to other treatments. WHY?

Horse12888
Horse12888 in reply to Twoofus

Your post breaks my heart. I would give anything to have intercourse again.

The answer to your question is that the main type of cancer cells that respond to Lupron don't entirely disappear when the patient becomes castrate resistant; they "hibernate" and can come roaring back later.

I urge you to look into transdermal estradiol. It may improve your QoL.

I have two in jections of Lupron left to complete 2 yrs. Jul 2020 and Jan 2021. What can I do for the fatigue and weakness? I walk fast 2 miles daily but feel weak and tired in the afternoon and sometimes take a nap. I am just 70 and have never felt like this. I have always had energy to do whatever I wanted to do and more. Lupron makes me feel like I'm more that 80.

Lifting weights helps rebuild the muscles that ADT destroys.

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