Lupron Treatment Duration: How long were you on it?

Posted by frankstags @frankstags, Jul 7, 2020

I have been diagnosed with Grade 3 prostate cancer with a 4 + 3 Gleason score of 7. This after having 2 PSA scores last year between 4 and 7. The cancer has not spread to the bones. I have received two Lupron injections 3 months apart and will complete 28 radiation treatments in the next couple of days. No surgery. I have tolerated the Lupron shots well with few but manageable side effects. I have an appointment to receive a third Lupron shot next month. My first PSA test after completing radiation won't be scheduled for 3 months. From researching Lupron, it appears that this is used for advanced stages of prostate cancer. From what I was led to believe, I was not advanced. My question: How long and how many Lupron shots might I need to go through? I will have this discussion with my urologist hopefully before proceeding with the next shot. Thanks for any information provided by the group.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I had the same Gleason score back in 2007 at the age of 63. was treated with two Lupron shots and 42 radiation treatments. To this day I have endured ED. Tried Viagra, Cialis and all prescription drugs as well as numerous non prescription, including penis injections. Today with a mixture of those drugs I can get about an 85 % erection and can only maintain for a short period with penetration being impossible. Back in 2007 this was the best way to go. For some. Unfortunately for me I fell in that 1-3% category where what can go wrong did. I still have hope for something to work. However, I have two doctor friends who in the past three years used a combination of seeds and minimal radiation treatment. Neither one of them has encountered any ED problems. Good luck to those of you who are dealing with Prostate Cancer.

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@ednh

I had the same Gleason score back in 2007 at the age of 63. was treated with two Lupron shots and 42 radiation treatments. To this day I have endured ED. Tried Viagra, Cialis and all prescription drugs as well as numerous non prescription, including penis injections. Today with a mixture of those drugs I can get about an 85 % erection and can only maintain for a short period with penetration being impossible. Back in 2007 this was the best way to go. For some. Unfortunately for me I fell in that 1-3% category where what can go wrong did. I still have hope for something to work. However, I have two doctor friends who in the past three years used a combination of seeds and minimal radiation treatment. Neither one of them has encountered any ED problems. Good luck to those of you who are dealing with Prostate Cancer.

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Welcome ednh. Sixty-three is much too soon to have to deal with ED. You're not alone. You may wish to join these discussions:

- Prostate Cancer: sex drive after surgery or other treatments https://connect.mayoclinic.org/discussion/sex-drive-after-surgery/
- I've lost all motivation, no sex drive, depressed. Ideas? https://connect.mayoclinic.org/discussion/new-to-group-2/
- ED treatments https://connect.mayoclinic.org/discussion/ed-treatments/

Did you know that the Urology department at Mayo Clinic in Rochester has a Men's Sexual Health Clinic? Have you sought advice at a specialized clinic?

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@bruto1

My treatment plan and related side-effects from Lupron are almost identical. I completed radiation treatment in May and plan to have my PSA tested in September. I remain on Lupron until then. My goal is to stop Lupron in September, presuming my PSA levels have dropped to a low and acceptable level. I will then be re-tested approximately 3 months later to determine if there has been any change in my PSA. Frankly, I don't believe there is a standard protocol for the duration of Lupron based on MD conversations and my own research. It has become apparent to me that some MDs will err on the side of long duration, even as long as two years to make sure that any remaining or emergent cancer cells post-radiation are starved of all testosterone to prohibit growth. Of course, extended use of Lupron guarantees that you will continue to suffer side-effects for some time, the most difficult of which in my judgment is the loss of libido. After two years on Lupron, regaining your libido after cessation of hormone treatment is highly problematic. Moreover, Lupron also can contribute to longer term health problems, including coronary issues. Much depends on the health on the individual patient. As always with prostate cancer it seems, hormone deprivation therapy comes with its own series of trade-offs that make clearcut decisions difficult. I would bring your hard questions to your urologist when you meet with him on this topic.

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Thank you for your words, si well said. I am just finishing my first year on lupron and have decided thats enough I want my life back. I am high risk gleason 9, but have faith its the right decision for me.

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I did 18 months, the attached chart shows my clinical history. The side affects were mild fatigue, hot flashes, muscle and joint stiffness and genitalia shrinkage. I did not lose my libido. Throughout those 18 months I maintained my "normal" life, exercised, travelled, worked in the garden, walked my dog....I did keep an eye on my weight which rose about 10 pounds despite watching my diet.

There are various studies you can look for, some will say six months when you are ding it in conjunction with SRT, others will say 18 months is just as effective as 24-36. There is intermittent ADT and of course, "lifetime" ADT or at least until you become castrate resistant...

If you decide to stop AFT, consider basing it on response to treatment, as an example, in my case, PSA had dropped to undetectable and stayed there for the 18 months, then, if you do sop, have a plan to actively monitor your PCa and decision criteria about if and when to go back on treatment based on imaging, labs such as PSA which could provide doubling and velocity ties, any other clinical data such as cardiovascular health. I see my urologist every 2-4 months for labs and a quick consult.

You will find a wide variety of decision "triggers" for resuming treatment. Some will say when PSA hits 4, I've seen 10. As always the questions is, if advanced PCa is not curable, what do I gain if I start treatment back up "early? Does it increase my overall survival...again, you'll find studies all over the map. For me, I would want hard clinical data, imaging when PSA hits .5 to 1.0, labs spaced 2-3 months apart showing PSADT and PSAV, then treatment for a specified period, if the results are "favorable," go back off treatment and actively monitor, repeat.

One has to balance quality of life versus quantity, how one reacts to treatment (some experience horrendous SEs from ADT to include depression), the financial toxicity, life expectancy...It may be that we are entering a phase where we can "live" with PCa, like people who have AIDS and Diabetes then die from something else...That decision is yours as to treatment, what, when, for how long.

I chose to be aggressive in the face of aggressive clinical history and data, it has worked, almost four years of no treatment. I am not saying that I'm cured but the time off treatment has been great!

There is no one "right" decision. We must each make our own based on our specific clinical history and personal preferences.

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I had 43 radiation treatments and took Lupron for 25 months. At about 18 months I wanted to quit Lupron but my urologist would not let me. I regret his decision because I have been off Lupron for 3 years and have never regained my testosterone, which is now about 15, and I am deplete of energy all the time. I took a testosterone replacement for 5 weeks but my breast started to develop and I terminated the testosterone replacement. I'm afraid I'm stuck this way for life.

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@kujhawk1978

I did 18 months, the attached chart shows my clinical history. The side affects were mild fatigue, hot flashes, muscle and joint stiffness and genitalia shrinkage. I did not lose my libido. Throughout those 18 months I maintained my "normal" life, exercised, travelled, worked in the garden, walked my dog....I did keep an eye on my weight which rose about 10 pounds despite watching my diet.

There are various studies you can look for, some will say six months when you are ding it in conjunction with SRT, others will say 18 months is just as effective as 24-36. There is intermittent ADT and of course, "lifetime" ADT or at least until you become castrate resistant...

If you decide to stop AFT, consider basing it on response to treatment, as an example, in my case, PSA had dropped to undetectable and stayed there for the 18 months, then, if you do sop, have a plan to actively monitor your PCa and decision criteria about if and when to go back on treatment based on imaging, labs such as PSA which could provide doubling and velocity ties, any other clinical data such as cardiovascular health. I see my urologist every 2-4 months for labs and a quick consult.

You will find a wide variety of decision "triggers" for resuming treatment. Some will say when PSA hits 4, I've seen 10. As always the questions is, if advanced PCa is not curable, what do I gain if I start treatment back up "early? Does it increase my overall survival...again, you'll find studies all over the map. For me, I would want hard clinical data, imaging when PSA hits .5 to 1.0, labs spaced 2-3 months apart showing PSADT and PSAV, then treatment for a specified period, if the results are "favorable," go back off treatment and actively monitor, repeat.

One has to balance quality of life versus quantity, how one reacts to treatment (some experience horrendous SEs from ADT to include depression), the financial toxicity, life expectancy...It may be that we are entering a phase where we can "live" with PCa, like people who have AIDS and Diabetes then die from something else...That decision is yours as to treatment, what, when, for how long.

I chose to be aggressive in the face of aggressive clinical history and data, it has worked, almost four years of no treatment. I am not saying that I'm cured but the time off treatment has been great!

There is no one "right" decision. We must each make our own based on our specific clinical history and personal preferences.

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kujhawk1978 let me add a bit more to your excellent response.

First of all - as of this date Prostate Cancer is NOT curable. The cause is as of yet unknown. With no known cause there is no cure.

So with all the variables involved there is no simple single answer to the question of how much Lupron or when. All Lupron does is buy us time, it's no more than an insurance policy. Do you buy into it or not?? Lupron is your current insurance policy against recurrent cancer. It's your life and only your decision to make. It's not all that complicated. Do you want insurance or do you not want insurance. Once again, there is no current known cure for this cancer. You're the buyer so you decide.

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@bruto1

After consulting several urologists, I concluded that based on my age (73), Gleeson scores, confinement of my cancer within the prostate capsule, and the relative post-treatment side-effects of both options, that radiation was the best choice for me. I went back and forth on deciding between oth options. The tipping point was a conversation with a Mayo urologist and surgeon who put it this way (I'm paraphrasing.), "My father is your age. Either surgery or radiation is a good choice to attack the cancer. However, the possible complications from surgery -- ED, incontinence, etc. -- are more consequential in the near term and can contribute negatively to your lifestyle. Radiation consequences are apt to more consequential in the longer term. At 73 or older, there's a good statistical likelihood that another disease or medical malady is going to enter your life in the not too far distant future. Do you want to suffer with surgical post-effects from prostate removal only to be hit from the side by another medical dilemma? Why suffer more than you need to." Put simply, for me it was a trade off between "pay now or pay later." I chose the former. Your calculus may be different, keeping in mind that the long term survivability rates for both treatments are effectively the same.

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My husband was recently diagnosed with prostrate cancer . I am trying to learn as much as I can joined this group and your post jumped at me. It described our similar situation and the dilemma we are going through His PCP immediately said surgery but my husband is going back and forth between surgery vs radiation. PSA was 12 and the Gleason 3+4. Positive effects of a course of action is good to know but I want to know the negatives of either procedure. - surgery /radiation. Your post brought reality to the picture considering his age (76) and quality of life. I need to be prepared for whatever route he chooses. Thank you again

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@npolanco

My husband was recently diagnosed with prostrate cancer . I am trying to learn as much as I can joined this group and your post jumped at me. It described our similar situation and the dilemma we are going through His PCP immediately said surgery but my husband is going back and forth between surgery vs radiation. PSA was 12 and the Gleason 3+4. Positive effects of a course of action is good to know but I want to know the negatives of either procedure. - surgery /radiation. Your post brought reality to the picture considering his age (76) and quality of life. I need to be prepared for whatever route he chooses. Thank you again

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There's a long time adage about PCa: "If you can cut it out [prostate/PCa] and put it in a jar, you've cured it". That 's long been my mantra and my anticipated choice while working in the prostate Ca field. And that seems obvious if you are highly certain your PCa is confined to the prostate. Yet, when my surprise turn came at 79 yrs, with 30 years of monitoring PSA, a rising PSA over 4 yrs to 7 ng, led to a Gleason of 4+5, but a clear PSMA PET scan forced me to review this long held idea of the choice I would make. My final decision was based on three things; Fewer side effects with radiation (although ADT is not benign due to side effects), greater confidence in ruling out metastases (PSMA PET), and significant improvements in targeting the radiation (5 days at higher dosage) and minimizing the likelihood of side effects (e.g. Hydrogel placement, etc). So, a comparison of side effects flipped my prior assumptions of my treatment choice. Note: Advances have be sufficiently rapid that I found it difficult to make decisions based on published data in the literature because my judgement was they often do not reflect these current improvements.

Good luck to you both.

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I was told it is usually 18 months , but some go as far as 24.
Definitely different depending on individual case so discussing with your docs is key. Good luck to you.

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