lupron vacation

[nextphase]

I’ve been on lupron now for three and a half years. My PSA has been undetectable since last November. I asked my OC about going on a lupron vacation and he said it would be fine now to try it. Just wondering if any of you have experienced this and how long before you had to go back on lupron. I’m 16 years plus since my robotic surgery I feel very fortunate to have come this far. The lupron shot every three months really didn’t bother me much outside of the normal stuff that goes with it. Thanks for your opinion on this.

[6357axbz]

You should have an exit strategy. How far to let your PSA rise before going back on ADT. Return to ADT when your PSA rises to just above undetectable, or let it rise to 0.5 where a PSMA scan should identify any new Mets. Then you can decide on RT to eliminate them.

[j-o-h-n]

My feeble advice is............ keep riding the range on top of old buckeroo...leave sleeping dogs lie....

Good Luck, Good Health and Good Humor.

j-o-h-n

[nextphase in reply to j-o-h-n]

Thanks, I'm assuming that you think I should stay the course with lupron?

[Kaliber]

I’m of the same mind set as j-o-h-n , above , ……you worked hard to put those cancer cells asleep ….. the easy ones died, the virulent ones are still there but asleep, ….. letting the remaining “ ugly “ ones arise from their sleep would be very risky IMHO.

Just one of many perspectives…..

❤️❤️❤️

[Tall_Allen]

If it doesn't bother you, why are you risking a vacation?

[nextphase in reply to Tall_Allen]

Thanks for the advice,I guess I think about the long term effects of this drug but your probably right to stay the course. I still haven't heard from anyone who has done this. Thanks

[Lettuce231]

My humble advice is, if it isn't broke then don't fix it. 🤔

[GP24]

You could switch to Bicalutamide monotherapy and keep your PSA low for several years with less side effects, e.g. bone loss.

[Justfor_]

GP24 is dead right, I you were in a remote snow covered area, with a 5 year old motor battery, would you switch off your car's engine or leave it running idle?

[NecessarilySo]

I have had a four year vacation from ADT, from 2016 to 2020. My PSA rose during the vacation from undetectable to 36, after which time I began to have lymph node metastases and possible bone metastases. That was over three years ago. Since then I have returned to Lupron quarterly and the metastases are gone now. In hindsight, I should have returned to ADT at about the 10 or less level. I was previously on Lupron intermittently, 2012, 2014, and 2016, returning to it when PSA reached 4. I used a high lycopene diet and heat on metastases to eliminate them. Others should take vacations at their own risk. Every case is different.

[mangeycritter]

BCR 4 years post op. Waited until PSA reached 5.70. Then was on ADT for 1 year. PSA <0.06 throughout that yr. Vacation begun after 1 year, in May of 2021; duration now 3 1/2 yrs. PSA undetectable until rose to 0.3 in Nov. 2023, 0.5 in Mar. 2024 and 0.71 in June, 2024, negative PSMA scan in June, 2024. MO expects PSA to be about 2.0 in Dec, 2024. PSMA scan scheduled Dec, 2024. BUT---- as many posts have pointed out, every case seems to be different. I'm not a doctor, and don't suggest this history would repeat for anyone else. Only mutation is SPOP. Will be 83 in Sep.

[janebob99]

Intermittent ADT is a well-established technique. You may want to Google papers on intermittent ADT and read up on it.

[JohnInTheMiddle in reply to janebob99]

Well planned intermittent ADT is not the same as "I'd like to go on a holiday".

[Apisdorsata]

I have had multiple vacations over the last nine years since diagnosis. The longest was two years. They are getting shorter. I'm soon going back on abiraterone mono therapy which I've found much easier to live with than leuprolide, enzalutamide or any other combination androgen suppression I've been on. I have never allowed my PSA to climb above 2 because I assume that resistance will arise some day and that the fewer cancer cells present the less chance of resistance developing. This may be wrong but it makes sense to me. Unfortunately the cancer I have grows rapidly off treatment. Doubling time about six weeks.

My current vacation has lasted only five months but what an enjoyable summer I've had feeling so much better off treatment! Quality of life matters more to me than duration of life. I'm 76 years old so I've already had my "three score and ten" and I know where I'm going. I wish you well.

[nextphase in reply to Apisdorsata]

Thank you

[Hawk56]

I can only speak from my experience....attached is my clinical history, 10+ years, so, not where you're at, but given the clinical data, GS 8, GG 4, 18 months to BCR, PSDAT and PSAV, not bad.

Roughly three years on treatment, the other 7+ off. I am currently off, last Orgovyx was 3 April this year. Labs in July showed PSA stayed undetectable, T recovering, 328. Next labs are in early October. So, Orgovyx worked as advertised for me, faster recovery of T after stopping.

How long will this vacation last, who knows. It would be nice to get 4-1/2 years as I did the first time when I finished triplet therapy in May 17.

TA and others say if it working and you're ok, why stop...they are not wrong. But...we generally know the risk of resistance the longer we are on ADT, then, well, there are treatment options too. Still, my understanding is that is a significant milestone in the journey, a milestone that has factored into my decision making.

For me, the side effects of ADT were annoying but not life altering. I lived with them, but, hated every damn hot flash, the stiffness in my joints, the fatigue, the genitalia shrinkage was more of a manhood thing since I've long been in a sexless marriage and you can still have orgasms through masturbation...didn't stop me from taking vacations with my wife, riding my bike, going to the gym, concerts...I will say this, two to three weeks after stopping Orgovyx, the fatigue and muscle and joint stiffness went away (hot flashes, like fat cells, they go away reluctantly). I truly feel better off treatment, but, hey, blinding flash of the obvious.

I think what was and is important in my journey is having decision criteria for stopping, actively monitoring while off, and decision criteria for going back on. For my medical team and I, the criteria for going back on was three or more consecutive PSA increases spaced 2-3 months apart, PSA between .5-1.0, PSMA PET imaging results, then decide on what treatment, for how long...

Your cancer, your life, your decision. The exponential growth brought about by medical research over the last decade has brought us a plethora of choice to manage our cancer.

Let the forum know what you decide.

Kevin

Clinical History

[nextphase in reply to Hawk56]

Thank you for your input on this. After reading all the comments I will probably go back on lupron. I’m 73 years old very active lifestyle and feel energetic most of the time. Thanks again.

[Garbonzeaux]

After being on lupron for about 4 years with undetectable PSA for all but the first 4 or 5 months, I went on vacation about 3 years ago. My testosterone went up to 640 (yes), but I didn't really feel much more energetic, as I expected to. My PSA remained undetectable for the first 2.5 years of my vacation, and then rose to 0.2. In a surprise to my MOs, a Ga PSMA PET scan detected 2 bone mets. So, I'm back on lupron (T down to 30 almost immediately and PSA undetectable again), and I had the two mets zapped. Was the vacation a good idea? I don't know.

[nextphase in reply to Garbonzeaux]

Thank you for your story.

[London441]

I think it depends on what you’re looking to get out of the vacation. Intermittent ADT has become more popular since more patients are insisting on it, and many more doctors are now ‘on board’ with it, but it’s a risk.

Alleviating ADT side effects is always the most likely driver, and we all get that. However, relief from them on a vacation depends on recovery of testosterone, and that is determined by 3 things: 1. Your age (I would add your biological age, which is different), 2. How long you’ve been on it, and 3. Your T level at diagnosis (baseline).

In your case, since you were diagnosed 17 years ago I assume you are in your seventies at least? You may or may not know what your baseline T was, and you’ve been on Lupron for 3 1/2 years.

It’s always worth a shot if you believe it is, but keep these factors in mind-you may well not feel much of a difference off the ADT.

On the other hand, changing up treatments to keep the disease ‘off balance’ so to speak-including vacations’-has become popular also. Strictly IMO this will continue to be recognized as valuable, though there is certainly no consensus on it among experts at this time.

[nextphase in reply to London441]

thank you for your insight, it’s nice to see all the different perspectives.

[JohnInTheMiddle in reply to London441]

"changing up treatments to keep the disease ‘off balance’" - lovely way of putting it - even if I'm not on board yet and don't see any guidance that I trust on how to do this.

[Horse12888]

When you say, "the normal stuff that goes with (Lupron)," I presume you're referring to SEs, thus your interest in a vacation. There is evidence that intermittent ADT is not inferior to continuous, which, I suppose, is why your oncologist is on board with the idea.

About 8 years ago, I quit a 24-month prescription of ADT after 12 months. My T recovered fully in about 5 months, but I had started to feel better after about 3 months. My PSA stayed undetectable for 4 years, now slowly rising.

As the others have said, you should have a "exit strategy," i.e., a PSA value and/or PSA doubling time that will trigger more ADT or a PSMA scan / radiation regimen.

At that time, you can also consider high-dose transdermal estradiol (tE2).

[nextphase in reply to Horse12888]

Thank you for that.

[Horse12888 in reply to Horse12888]

I would add that high-dose transdermal estradiol is not FDA approved at this point. Though it's easily found elsewhere, you have to hunt for it here. The concept is that presence of lots of estrogen drives the T into castrate levels, while preventing the brain from producing all the fatigue, depression, moodiness, brain fog, and hot flashes. It's definitely where I'm going if my PSA continues to rise.

[MateoBeach]

The “normal stuff” that comes with Lupron and similar ADT is actually substantial harm to the body. Loss of bone mineralization (weakening), loss of muscle and strength requiring more than typical strength training to try and maintain, accumulation of body fat including visceral fat, increased risk of cardiovascular and metabolic diseases, degrading of testosterone dependent protective neural pathways in the brain and spinal nerves, leading to some cognitive impairment in many. And of course continuous ADT invariably leads to castrate resistance, a more advanced stage of the disease.

So I favor limiting or delaying ADT when possible. It’s is used too early and for too long in many circumstances. Just something to consider. I would do the intermittent ADT (vacation) for as long as possible with full testosterone recovery or even replacement if it does not recover.

[nextphase in reply to MateoBeach]

Thank you for that advice. Have you yourself ever done this adt vacation? Thanks again.

[Neathuh1 in reply to nextphase]

One more reply: I’ve tried taking a break from Lupron twice in the last 12 years, but kept getting labs done every three months. Both times my PSA almost doubled in that amount of time. Overall I’m doing okay so I’m just going to stick with the program from now on. Good luck to you, whichever route you take.

[nextphase in reply to Neathuh1]

Thank you so much for sharing your thoughts.

[MateoBeach in reply to nextphase]

I’m on a modified BAT program that has been working extremely well. I take ADT (Orgovyx with Nubeqa) for just one month out of four. So it is like a super vacation.

[SteveTheJ]

Diagnosed stage 4 in April 2020, started Lupron plus Erleada at that time. After 2 consecutive years of no tumors on scans, stopped Lupron October 2023. I will have another set of scans in Sept. Hoping for the best.

I can't say I feel much different, much less better, but slightly so. Mostly fatigue and brain fog.

[nextphase in reply to SteveTheJ]

Thank so much for sharing . Stay well!!.

[janebob99]

Some other tidbits of information...

The Artera.ai (Artificial Intelligence) analysis of men's biopsy slides and clinical data recently discovered a profound result (see artera.ai). They discovered that 2/3 of men don't benefit from doing ADT, while only 1/3 of men do benefit from ADT (in terms of survival curves). Medicare paid for my test (which costs $5000 without insurance). They said I would not benefit from doing ADT.

Horse12888 is correct. Transdermal estradiol (E2) will eliminate hot flashes and prevent osteoporosis (Published Phase-II data from the PATCH study), as well as treating problems with high glucose, high cholesterol, and other SE's from traditional ADT. Your PCP can write a prescription for one, large E2 patch per week (strength = 0.1 mg E2 absorbed over a 24 hr period). Women use these patches to treat osteoporosis due to low estrogen from Menopause. This is called low-dose, estrogen "Add-Back", because it replaces the estrogen that is always lost from having sub-castrate (very low) testosterone levels during ADT.

Bob in New Mexico

[nextphase in reply to janebob99]

Thank you for the good information. I’ll check it out.