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Stopping Lupron??

Looking for advice on Lupron injections for treatment of prostate cancer.

Found I had prostate cancer. High PSA values, 8 of 12 cores were positive.

Doctor suggested Lupron (45 mg), wait two months then start radiation treatment.

That went well. I had a second Lupron injection. Now the doctor thinks I need to continue the Lupron injections.

Based on my PSA numbers I want to stop the Lupron injections and watch the PSA levels then move on.

What would you do????

Here are some PSA Levels

Feb 2018 35.70

March 2018 40.39

Oct 2018 3.01

Feb 2019 0.14

Apr 21 2019 0.06

45 Replies
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If the Lupron is working why stop. If at sometime in future Lupron fails you can move on to other ADT drugs.

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Thank you for your input

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For your high risk prostate cancer, at least 18 months of Lupron are required after radiation. You can't stop and re-start - that will cause resistant strains.

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What makes this high risk? I didn’t see any Gleason values or mention of Mets?

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PSA=35.70 (anything above 20 is defined as high risk)

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TA, Your statement that 18 months of Lupron are required after radiation and that stopping and re-starting will cause resistant strains has me worried. The trial my RO has me on stops Lupron 6 months after the beginning of 6 weeks of IMRT. He originally said the was to give my body a rest but I’m wondering if it’s not just to see how effective the radiation is in keeping the cancer down. I’m handling the Lupron, no problem. If staying on Lupron longer will provide better outcomes then that’s what I want to do. Perhaps this is a case of too much focus on the trial and not enough on the patient. I’ll be seeing my MO on Tuesday and will take this up with him as well. Is there evidence showing 18 months of Lupron showed be given after radiation?

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I had the max radiation dosage after my Dx of G9, stage T3B, node positive PCa.

I had 16 months of ADT (Lupron). I quit after 16 months, My nadir is undetectable, which was reached in less than 1 year of treatment.

My move is considered risky, but the side effects for me were devastating.

Perhaps I'm foolish, lucky or both.

The point is that we don't all respond the same way.

Some men never reach an undetectable point. IF I never got there, perhaps I would have continued the ADT but ....

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If I remember correctly, your situation is different from the OP. Here's what we know about ADT duration for localized high risk PC:

pcnrv.blogspot.com/2016/08/...

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Thanks TA. Good info, but what does OP mean?

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Original Poster

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While the results in the article you directed me towards are for localized high risk PCa intuitively, at least to me, this would also apply to high risk PCa with distant Mets. They didn’t happen to include that group in the studies referenced in your article but why wouldn’t they apply to that group as well?

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There are two reasons that temporary ADT is used with RT for localized PC:

1) to radiosensitize the cancer before and concurrent with the radiation

2) to clean up any remaining cells that may have escaped direct destruction by radiation

While reason #1 is still important for men with known metastases (pelvic LN or distant), it is unclear that there is any advantage when there are distant mets. We know that ADT after distant mets have been detected is not curative.

However, if you want life-long ADT after mets have been detected, possibly with intermittent ADT, that is certainly reasonable. But the reasons for its success (minimizing clones) are different from the reasons for the success of adjuvant ADT for localized PC.

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Thanks again TA. Your knowledge is profound and you give freely. I think there is a special place in heaven for people like you. It will be interesting what my MO has to say about this when I meet with him on Tuesday.

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Robotic prostatectomy August 2014.

Gleason 9. Cancer had escaped the prostate

39 radiation treatments 6 months of Lupron.

Mild incontinence ~2.5 years.

Aus implant (VA) Feb 2018.

AUS failed July 2018 due to previous radiation and tissue erosion.

AUS re-implnated (Mayo/Jax) Dec 2018.

New life underway.

PSA began slight rise summer 2017.

Back on Lupron every 4 months.

2 more injections will take me to 2 years of Lupron November this year.

PSA during Lupron injections is negligible.

What are my chances of strain resistant cancer occurring?

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Your situation is different from the OP. You will certainly have castration resistance at some point.

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Resistant strains from intermittent therapy. Are there any studies to support that view?

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Yes- all iADT studies so far end when castration resistance occurs.

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Don’t all adt treatments, including continuous (non-intermittent) treatments eventually end in castrate resistant PCa? If so the question becomes does intermittent use result in CR happening sooner?

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I've seen no evidence that CR happens sooner or later with iADT. That's not its purpose.

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When you refer to “resistant strains” am I correct in assuming you mean CR cancer?

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Yes, castration-resistant strains of prostate cancer.

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You say “We know that ADT after distant mets have been detected is not curative.” I agree. It delays the spread of existing cancer but doesn’t remove all cancer. That being said, which treatment will longer delay the emergence of Hormone Resistance, continuous adt or intermittsnt adt?

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Neither - CRPC emerges about the same time with either

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Then why do you say above “For your high risk prostate cancer, at least 18 months of Lupron are required after radiation. You can't stop and re-start - that will cause resistant strains.”

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This is adjuvant ADT(limited term given along with radiation), not lifelong ADT (intermittent or continuous).

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So if I understand correctly there has been lifelong ADT for distant metastatic patients, and adjuvant ADT for non-metastatic or local metastatic patients given RT. Being in a trial giving me RT while I have distant Mets puts me in a third category for which not a lot of study has been done regarding how on going ADT should be administered.

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Right.

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Thank-you again! This gives me a solid basis to enter into discussions on Tuesday regarding my ongoing ADT as a participant in this trial.

For anyone who may be following this thread, I was advised to pay close attention to what your MDs are doing regarding your treatment when you are participating in a trial because sometime it may be possible that they are focused more on their trial than the are on the patient.

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My plan of treatment at MDA includes stopping Lupron approximately 6 months after start of 6 weeks of IMRT, monitor PSA closely and restarting Lupron after PSA climbs back up to 2.

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Thanks for the reply... Because of the issues and side effects of Lupron I want to stop. My PSA has dropped from 40 down to 0.06. I want to watch PSA for the next few months then move on.

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Good question- and frankly one I am wrestling with too. We don’t know your full story but I would likely go with the recommendation and continue ADT if you aren’t having critical side effects. Another option is to seek a second professional opinion - and then decide, perhaps even with a third of there is any disagreement.

In my case, I was GS7 intermediate risk but then after a surgery (PT2NoMo) learned I still had PSA although lymph nodes were all clear. Maybe some prostate was missed in surgery, but axumin scan suggested a nearby lymph node. I’m now also done with EBRT radiation and I am on month 6 of 18 with ADT+Zytiga.

Side effects aren’t too bad, but definitely more fatigued and I sure wish I was done too. The tough part is not knowing the risk better—- did the surgery + radiation already get it all...or is the ADT+Z needed to finish things off? Playing it safe for now but will be revisiting this plan each time I go in for the 3-month shot! Good luck.

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Stay the course. Lupron sucks but the alternative sucks more.

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Thanks for the reply. Have hope with the PSA dropping

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Do some research on "intermittent hormonal therapy" or "hormone holiday". That type of treatment seems to be becoming more popular. So at least you might see some things you can talk to your doctor about. The Tall Allen response about "high risk" would be a great place to start. Good luck to you.

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From late 2012 to fall of 2016 I was on Eligard intermittently combined with Casodex. My new urologist in Fl switched to Lupron and dropped the Casodex. The Eligard regimen did not lead to any indication of resistance. Now in 7th year of Lupron continuously since fall 2016 and no sign of resistance yet. Stay on Lupron continuously IMHO.

CalBear74

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May I ask what you mean by intermittently? Did you take extended breaks from the Eligard/Casodex regimen between 2012 and 2016 and if so for how long? Thank you in advance.

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My urologist in Arizona required six months on six months off till fall of 2016.My urologist in Florida does not believe an intermittent schedule is more effective.

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Thank you

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I am high risk as well, and my doctors and all the reading I've done suggest that two years of hormone suppression (Lupron and similar drugs) coupled with radiation is standard for that level of risk. I was hoping for a six-month course, but that seems limited to people with a lower level of risk based on PSA, Gleason score, and some other indicators I don't recall. I don't much like the side effects that come with the hormonal treatment but figure I just need to do the recommended therapy to give myself the best shot at longterm survival. It's a long haul but probably worth it.

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I know what you mean by wanting to stop Lupron having done 6 months on the stuff myself. It isn't easy and a holiday would be nice. However, it seems to be working for you and you may not need to do it for longer than 18 months. However if it is life long you will get some breaks. There have been some who have taken it intermittently the most famous was documented by Ralph Blum and Mark Scholz in the book Invasion of the Prostate Snatchers. Also recently, from an article in Wired Magazine The Darwin Treatment Roxanne Khamsi, "Some doctors are already trying adaptive therapy on patients outside of clinical trials. In 2017 a doctor in Oregon, inspired by Gatenby’s pilot study, started a prostate cancer patient on a modified version of the approach when he refused the standard continuous dosing. She has since started treating a second man using adaptive therapy. Other oncologists might be doing the same. It’s nearly impossible to know for sure, because adaptive therapy doesn’t require government approval. The protocol uses already-approved medications, and the US Food and Drug Administration doesn’t police specific dosing schedules.

Experts urge caution, however. The prostate cancer study was very small, and without a randomly assigned control group the results aren’t truly reliable. While the majority of the men in the trial remain stable, four more saw their cancer progress since the paper came out. “This is an approach that now needs to be carefully studied in prospective clinical trials before it is adopted into clinical practice,” says Richard L. Schilsky, chief medical officer for the American Society of Clinical Oncology. Years could pass before a large-scale test of adaptive therapy takes place. Len Lichtenfeld, interim chief medical officer of the American Cancer Society, echoes Schilsky’s concerns. “Is it intriguing? Yes,” Lichtenfeld says. “But there is still a long way to go.”

Gatenby agrees that adaptive therapy needs rigorous testing. He conveys a kind of humility you don’t see very often in the upper reaches of medical science. He told me multiple times that he is not an interesting subject to write about, and more than once I heard close colleagues mangle the pronunciation of his name (which is pronounced GATE-en-bee); apparently he had never corrected them. But when he believes in something, he doesn’t relent. And he believes in adaptive therapy. “He’s like a teddy bear, but underneath that soft exterior he’s made of steel,” says Athena Aktipis, who studies theoretical and cancer biology at Arizona State University and has collaborated with Gatenby."

One thing you will need to do is continue to exercise and watch your diet. Resistance training to avoid muscle loss and walking, running, or swimming to keep your stamina. Good Luck!

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You NEED to get your PSA down to the 'nadir' - meaning it's lowest point possible.

Your numbers are still on the PLUS side, although you are approaching zero, you aren't there yet.

For instance, my numbers are <0.02 - which equates to undetectable.

Then, you want that nadir (lowest point) to happen / last for at least 3 or 4 cycles (1 year or more).

IF you stay 'detectable', you can't simply stay there, NOT knowing you could have achieved a lower number with a better prognosis.

It is my opinion only, of course, but I've seen enough to recognize the difference.

You may be taking an uncalled for risk that you might regret in the future.

Think carefully seek a qualified second opinion.

Best wishes ...

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I would never take Lupron. It has a 40% chance of causing colon cancer. My father took, it for years and he had prostrate cancer, but the lupron caused the colon cancer and killed him. I had high dose rate brachytherapy and got a 100% cure using this method that is painless and quite simple to tolerate.

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I would stop the injections and monitor the PSA. If the PSA goes above a number that you are uncomfortable with, you can restart the injections. They have a name for this. It is called intermittent therapy.

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You have NOT reached your 'nadir' yet, unless you stop responding to treatment.

My path was similar to yours. I quit Lupron after 16 mos, after 4 consecutive cycles of being undetectable (<0.02).

I would suggest you continue until you 'bottom' out.

You are still above 'zero', therefore, you still have room to go lower.

IF you can't attain zero, then the action plan needs to reflect that (moving to chemo etc ...).

LOWER it now, while you still have the chance at this 'early' stage in treatment.

A more aggressive approach is in your best interest.

Been there, done that .....

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I had suffered very unpleasant side-effect of Nilutamide

after years of intermittent ADT with Lupron and Bicalutamide (Casodex).

here is my experience :

I have been switched to Nilutamide (Nilandron),from Bicalutamide (Casodex)

for the same reasoning of my Oncologist,as well and after about two and half month of taking it, caused me Pneumonitis.

It was diagnosed, unfortunately, as bacterial ,non specific Pneumonia

and I almost died. I was loaded with many antibiotics,was on Oxygen

for 2 months,was given Corticosteroids and

Nilutamide was withdrawn. Than finally I was getting better after loosing 20 Kg (about 44 pounds ) in 2 months.

I am professional Chemist,

so later I was researching what was going on. One of Nilutamide rare side effects, in about 2-4 % of patients may cause "Interstitial Pneumonitis",

pneumonia like condition. It is described in the medical literature,but you have to specifically look for it.

None of my attending physicians was aware of it !

Here is one of the links:

Nilutamide, Pneumonitis

and report on eight patients:

thorax.bmj.com/content/thor...

Both Bicalutamide and Nilutamide affect liver functions, even Bicalutamide was reported that it may rarely cause Pneumonitis :

Int J Clin Oncol. 2011 Dec;16(6):763-5. doi: 10.1007/s10147-011-0239-x. Epub 2011 May 3.

Interstitial pneumonitis induced by bicalutamide given for prostate cancer.

Masago T1, Watanabe T, Nemoto R, Motoda K.

I am on Lupron or alternatives eg Eligard --

My PSA has risen from 1 to 5.7 , in two years.

I also started Ketogenic diet, on advice of my other physician.

I am no longer taking Nilutamide or Bicalutamide ,have appointments with specialists to see what will be the alternative.

Would like to have your comment or experience.

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