Prostate cancer treated with Leuprolide

Posted by donnelson @donnelson, May 25, 2016

I had 43 days of prostate cancer radiation about 5-6 years ago. My PSA becgan to rise in summer of 2014. Suddenly it went from 5 to 20 in 4 months, only to drop a bit the next week. My doctor suggets Leuprolide which is administered every 6 months by a shot. I’ve read many bad side affects(swelling of feel and legs, visual changes, hot flashes and generally lower testrosterone levels). Have others had this problem? I’m wondering if I should wait a month and have the PSA drawn again?.

Hi @donnelson. I looked it up and you are correct… they are one in the same. Leuprolide is the generic name and Lupron is one of the brand names. Glad to hear you pushed back on your doctor a little and are asking some critical questions about what’s right for you. It’s so important that we act as our own health advocates. I didn’t see much information about alternatives. Have you asked your doctor about an alternative? Let us know how your next PSA goes.

Liked by success101

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interresting,reply.
Most definitely. I certainly,wish we had done that in my husbands case. Good luck
Success101

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@donnelson

Thank you.  You re the first to make a positive response.  The others sounded like like a death or at the least a torture treatment.

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the first thing thatnyou should know is that you and your wife are going to make very drastic options when you start lupron. My husband and I have been able to live in a different way with no sex at all, we didnt want to use the bomb. I prefer that He is alive than not having sex

Liked by JohnWBurns

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@donnelson

Thank you.  You re the first to make a positive response.  The others sounded like like a death or at the least a torture treatment.

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That is something o think about! Are there no other treatments?

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@donnelson

Thank you.  You re the first to make a positive response.  The others sounded like like a death or at the least a torture treatment.

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I dont think so but as I said before he has been alive for 15 years with this treatment . I think that another solution is doing another surgery to remove your testicles.

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@donnelson

Thank you.  You re the first to make a positive response.  The others sounded like like a death or at the least a torture treatment.

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It just gets better and better

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@donnelson

Thank you.  You re the first to make a positive response.  The others sounded like like a death or at the least a torture treatment.

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is it possible to get all the Lupron comments on one page so I could print them and show them to my doctor??

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@donnelson

There is some question about Leuprolide ande Lupron. I’m assuming that they are the same? My urologist has agreed to another psa to see whether there has been a change. since it shot up so quickly, I’m wondering if it is a fluke. He agreed that there is a major lifestyle change that happens with this drug.. I’m wondering if there is an alternative? Also once he once told me that psas at 50 and more were not uncommon??

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Don, suppression of testosterone is the standard next level of treatment for prostate cancer that has recurred after first or first and 2nd level treatments have failed. By first and second I mean surgery and/or radiation. If you still have PSA after the prostate area has been aggressively treated the assumption is that enough cells have accumulated somewhere outside the prostate capsule to be able to create PSA, in other words, a tumor, however small. Since they don’t know exactly where it is, they treat you systemically by depriving the prostate cancer cells of their primary growth driver, testosterone. Some men have minimal side effects, some serious. Its very subjective. Your doctor should have explained this to you as well as the fact that their are no clear alternative treatments available now but some are emerging. Try to exercise as much as you can within reason. Ask for help with any depression if it is a problem. Here is one website that covers many topics related to advanced prostate cancer: http://malecare.org/advanced-prostate-cancer/
Here is another and there are more: http://www.yananow.org/Experiences.shtml
By all means get your PSA tracked as often as advised and avoid any temptation to self-treat based on unproven anecdotal evidence.
I’ve been treated twice, surgery and radiation, and it looks like I’m on my second recurrence. I’ve had low testosterone without getting Lupron and I know how it feels, in my case awful. But, considering the alternative, its worth working with it. Let me know how you’re doing.

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@donnelson

There is some question about Leuprolide ande Lupron. I’m assuming that they are the same? My urologist has agreed to another psa to see whether there has been a change. since it shot up so quickly, I’m wondering if it is a fluke. He agreed that there is a major lifestyle change that happens with this drug.. I’m wondering if there is an alternative? Also once he once told me that psas at 50 and more were not uncommon??

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I had an appointment with a medical oncologist this morning and we went over all the options. My psa at the last test was 30 which means that is it still rising, although some psa’s have actually gone to 10,000. I m going to have a bone scan and a CTScan, last ones were a few months ago next week. Then I will meet with her and see what she suggests based on the results. I could start with 1 Lupron shot and see how that works. Then meet with the urologist and perhaps go on a regular schedule with frequent psa tests, etc.She said the worst side affect for most men is hot and cold flashes.(at last we get to experience first hand what women go through). Some are very strong and others had minor problems. There are pills for that, she said. Since I also have afib I am used to frequent tests to gage the affects of various medication levels. Since I was seriously dizzy with gabapentin that is a real possibility here, she said.

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@donnelson

There is some question about Leuprolide ande Lupron. I’m assuming that they are the same? My urologist has agreed to another psa to see whether there has been a change. since it shot up so quickly, I’m wondering if it is a fluke. He agreed that there is a major lifestyle change that happens with this drug.. I’m wondering if there is an alternative? Also once he once told me that psas at 50 and more were not uncommon??

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There is the idea of ‘Watchful Waiting’ but it sounds like with a rising PSA treatment is advisable. But at the end of the day its your call after you get the info. I encourage you to check some of those support groups. Keep us in the loop.

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@donnelson

There is some question about Leuprolide ande Lupron. I’m assuming that they are the same? My urologist has agreed to another psa to see whether there has been a change. since it shot up so quickly, I’m wondering if it is a fluke. He agreed that there is a major lifestyle change that happens with this drug.. I’m wondering if there is an alternative? Also once he once told me that psas at 50 and more were not uncommon??

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HAVE YOU HAD A PROSTATECTOMY, FROM MY HUSBANDS EXPERIENCE THAT HE HAD A VERY AGRESSIVE PROSTATE CANCER MY SUGGESTION GO WITH LUPRON AND SEE IF YOUR PSA LOWERS. MY HUSBANDS IS 0.07. THIS MEANS UNDETECTEBLE. WISH YOU ALL THE LUCK . FLOR

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Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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@donnelson, it is encouraging that you had five years of confidence that your prostate problem was manageable. I hope you also can be confident that your rising PSA reading last summer may not have been caused by a recurrence.

These discussions tend to refer to PSA tests as definitive for the disease and useful in tracking its progress over time. This is unfortunate. To put the PSA in proper perspective, here is a link to an education “tool” published by the American Urological Association last year: https://www.auanet.org/common/pdf/advocacy/grassroots-toolkits/DPCBooklet.pdf.

Note in particular this statement: “Most high PSA results are false positives (about 70 percent). Also, there is a small chance you may have prostate cancer even with a normal PSA test (about a 1-2 percent risk).”

This paper lists five major non-cancer causes of high PSA. I’ve had four of the five. They elevated my PSA repeatedly, but after nearly 20 years of up-and-down PSA readings, no cancer has been diagnosed.

When I passed my 70th birthday, my urologist stopped taking the PSA, in keeping with Urology’s reigning principles of treatment. He said that, at my age (now 80), he wants me to avoid the false hopes and false fears that the PSA causes so often. Like your urologist and oncologist, he relied on other tests and examinations that (so far) confirmed his no-cancer diagnosis.

I sincerely hope that your bone and CT scans show positive results and that you won’t have to worry about the risks of taking Lupron.
Martin

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@donnelson

Thanks.  Instead of surgery I had 43 days of radiation.  All was well (from 2011 ) until this summer when the psa for some reason went from 8 to 20 to 31.  I met with a medical oncologist yesterday and we decided to do bone and CT scans next week and then regroup.  She said that hot flashes were most bothersome but we could start slowly with lupron and see how that goes. 

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Follow the oncologist’s advice. A rising PSA post treatment is indicative of a likelihood of treatment failure and should be taken seriously. There is a lot of disagreement among urologists and oncologists regarding the fairly recent changes in recommendations for routine PSA testing. Regardless of that, it is one animal when you have never been diagnosed with prostate cancer and another when you have been diagnosed with it and treated for it. A clean bone scan is not proof that you don’t have a recurrence. It just means that not enough cells have amassed in bone to generate PSA. Follow the protocol as dictated by your oncologist, or not. If you don’t, ask to know the risks.

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Hi all, Incredibly informative conversation happening here, and perhaps somewhat confusing with regards to PSA guidelines.

@predictable, I appreciate the American Urological Association reference you provided. It is very well articulated in plain language. However, this information is specific to prostate cancer screening, not PSA reading with respect to monitoring for recurrence.

Here are some references about post-treatment monitoring from Harvard Medical School:

– Post-treatment monitoring http://www.harvardprostateknowledge.org/post-treatment-monitoring
– How to handle a relapse after treatment for prostate cancer http://www.harvardprostateknowledge.org/how-to-handle-a-relapse-after-treatment-for-prostate-cancer

I’d like to quote the opening paragraphs of the first article:
“Today the prostate-specific antigen (PSA) screening test is often the first indicator that cancer may be present in the prostate gland. The usefulness of PSA testing, however, is not confined to the initial screening and decision making. After treatment, PSA monitoring is the primary tool for measuring treatment success and for detecting early signs of cancer recurrence.

The PSA value and its velocity (its rate of change over time) are valuable tools for assessing options for further treatment. You will continue to have regular PSA tests throughout life as an early-warning system to detect residual or recurrent disease. Let’s not forget that a significant percentage of men with a normal PSA will have an abnormal digital rectal exam (DRE), and both should be done!”

@donnelson it sounds like your oncologist is keeping a close eye on things. As a woman, I can tell you hot flashes are bothersome, but manageable. Oops did I just give away my age?

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