Lupron yeah or Lupron nay that is the question.

Posted by dpcarriere @dpcarriere, Feb 13, 2022

I've rationalized my need for Lupron Therapy. But there are holes in my analysis. The holes are there because of lack of data. So I'm in search of data. I want to hear the real data on the pros and cons of Lupron. All I have heard are generalities. Nothing specific, nothing quantatative, so let's get real.
I invite all to participate including moderators as this is relevant to all and also beneficial to all. My initial query. Who, what facility, has my Lupron answers? They have to be there else we would not be using that form of therapy. It had to have been researched into oblivion as are all procedures in the US of A thus justifying their cost structuring. When does Lupron cease to be effective? That is, what quantifiable condition of our tumors renders Lupron useful? If your doctor says you are cured of your cancer then why continue it's use? If it ain't broke why "fix" it??

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

I am not sure this is what you are looking for, but here goes. It has taken 10 months, 4 facilities, and 3 doctors to finally get to the point we have this information.
My husband is 75, he has the largest prostrate any of these doctors has ever seen and PSA of 18 and rising. He has a large high grade tumor taking up half of prostrate. After a PSMA PET CT they cannot see any in his bones. The decision was made given that his testosterone was already fairly low and age and the hits he would take on his quality of life that the roughly 10% gain it would give him in treating this particular tumor, was not worth it. He is scheduled for radiation set up and will be beginning 28 treatments of radiation, without the lupron.
Are you starting treatments for prostrate cancer? What quality of life concerns do you have about the lupron?

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@auntieoakley

I am not sure this is what you are looking for, but here goes. It has taken 10 months, 4 facilities, and 3 doctors to finally get to the point we have this information.
My husband is 75, he has the largest prostrate any of these doctors has ever seen and PSA of 18 and rising. He has a large high grade tumor taking up half of prostrate. After a PSMA PET CT they cannot see any in his bones. The decision was made given that his testosterone was already fairly low and age and the hits he would take on his quality of life that the roughly 10% gain it would give him in treating this particular tumor, was not worth it. He is scheduled for radiation set up and will be beginning 28 treatments of radiation, without the lupron.
Are you starting treatments for prostrate cancer? What quality of life concerns do you have about the lupron?

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Thank You! Thank You! for raising this question. In May I will be at the 42 month mark of Lupron. I HATE IT!!! It is always the “go to” drug all the doctors want to go to. My treatments have been intermittent so I know how much better I feel off it but every time my PSA rises it is always what they want to give me with whatever other treatments are being offered. MODERATORS please get involved with this. Ask Dr.Kwon for his expertise in this. And Doctor Davis for they are talking about giving me another shot in May. I DO NOT want it but I do not want to be a non compliant patient and if it will help cure me? I was told by doctor Kwon when I first came I was curable but the continued Lupron is taking a toll on me. Help!

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I took Lupron for 25 months. Since then my body has almost completely stopped producing testosterone. My testosterone level now wavers between about 10 to 15. I'm very tired. I took a testosterone replacement, AndroGel, for five weeks and my breasts started to develop so I quit taking it. Since then I have not found a way to take testosterone and prevent breast development. Thus, I remain very, very tired with no relief in sight. After taking Lupron for 18 months, I was very tired, especially in my legs, and I expressed the desire to terminate taking it but my urologist insisted I continue for at least another six months. I did but wish I hadn't.

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@round5

Thank You! Thank You! for raising this question. In May I will be at the 42 month mark of Lupron. I HATE IT!!! It is always the “go to” drug all the doctors want to go to. My treatments have been intermittent so I know how much better I feel off it but every time my PSA rises it is always what they want to give me with whatever other treatments are being offered. MODERATORS please get involved with this. Ask Dr.Kwon for his expertise in this. And Doctor Davis for they are talking about giving me another shot in May. I DO NOT want it but I do not want to be a non compliant patient and if it will help cure me? I was told by doctor Kwon when I first came I was curable but the continued Lupron is taking a toll on me. Help!

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This forum isn’t really where the doctors get involved. This is for support and sharing of information with other patients, caregivers, and families. I think all the information you posted is valid. Those are exactly the reasons the doctor stated why he didn’t put my husband on it. I would hope you have a frank conversation with your doctor about how you feel.

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@round5

Thank You! Thank You! for raising this question. In May I will be at the 42 month mark of Lupron. I HATE IT!!! It is always the “go to” drug all the doctors want to go to. My treatments have been intermittent so I know how much better I feel off it but every time my PSA rises it is always what they want to give me with whatever other treatments are being offered. MODERATORS please get involved with this. Ask Dr.Kwon for his expertise in this. And Doctor Davis for they are talking about giving me another shot in May. I DO NOT want it but I do not want to be a non compliant patient and if it will help cure me? I was told by doctor Kwon when I first came I was curable but the continued Lupron is taking a toll on me. Help!

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Hi Round5, volunteer mentor @auntieoakley is right. Mayo Clinic Connect is a forum for patients to connect with fellow patients and caregivers.

To discuss your treatment options with Drs Kwon and Davis, I suggest you send a message through the Mayo Clinic patient portal. Your quality of life is very important and that's why treatment decisions are arrived at by combining the doctors' medical expertise AND your needs and values.

Do you use and have access to the patient portal?

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@auntieoakley

I am not sure this is what you are looking for, but here goes. It has taken 10 months, 4 facilities, and 3 doctors to finally get to the point we have this information.
My husband is 75, he has the largest prostrate any of these doctors has ever seen and PSA of 18 and rising. He has a large high grade tumor taking up half of prostrate. After a PSMA PET CT they cannot see any in his bones. The decision was made given that his testosterone was already fairly low and age and the hits he would take on his quality of life that the roughly 10% gain it would give him in treating this particular tumor, was not worth it. He is scheduled for radiation set up and will be beginning 28 treatments of radiation, without the lupron.
Are you starting treatments for prostrate cancer? What quality of life concerns do you have about the lupron?

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I have finished my 28 weeks of Proton Beam Therapy.

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I don't understand the discussion of stopping Lupron/Eligard. They both shrink the prostate and stops the production of testosterone which feeds the growth of Prostate Cancer. Isn't that what most of us want, stopping the spread and growth of the cancer? Yes, the side effects are no fun at all, the hot flashes, the sweating, and no sex drive suck, but given the choice I would accept them again. I realize we are all different and we all have to make our own decisions but if my PSA moves up from <.1 and my Oncologist says back on Lupron/Eligard my answer would be a resounding yes. JMO

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@dandl48

I don't understand the discussion of stopping Lupron/Eligard. They both shrink the prostate and stops the production of testosterone which feeds the growth of Prostate Cancer. Isn't that what most of us want, stopping the spread and growth of the cancer? Yes, the side effects are no fun at all, the hot flashes, the sweating, and no sex drive suck, but given the choice I would accept them again. I realize we are all different and we all have to make our own decisions but if my PSA moves up from <.1 and my Oncologist says back on Lupron/Eligard my answer would be a resounding yes. JMO

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How long were you actually on Lupron? The shorter treatments weren’t all that bad on me either. It’s the continuous and long term treatments that are taking their tolls and knowing it will eventually quit working anyway. If you do have a reoccurrence and do say yes later and are on it longer/multiple times you will probably then discover what some of us are talking about.

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@colleenyoung

Hi Round5, volunteer mentor @auntieoakley is right. Mayo Clinic Connect is a forum for patients to connect with fellow patients and caregivers.

To discuss your treatment options with Drs Kwon and Davis, I suggest you send a message through the Mayo Clinic patient portal. Your quality of life is very important and that's why treatment decisions are arrived at by combining the doctors' medical expertise AND your needs and values.

Do you use and have access to the patient portal?

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Yes I do and will.

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@round5

Yes I do and will.

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@round5, great. I hope you'll report back what you learn after consulting with your team.

@dandl48, I completely understand your question. Why wouldn't everyone do everything medically possible to shrink the tumor and to reduce the risk of recurrence and/or growth? I think the answers are as individual as the person taking the treatment. It depends on so many factors – from severity of side effects, quality of life preferences, age, other conditions one may have, and the list goes on. What is an obvious choice for one person may be more nuanced for another.

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