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  • No side effects on lupron?

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    Old 05-07-2020, 05:54 PM   #1
    GuyBMeredith
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    No side effects on lupron?

    Are there any forum members on lupron for 6 months or less who have never experienced side effects?

     
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    Old 05-08-2020, 04:49 AM   #2
    IADT3since2000
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    Re: No side effects on lupron?

    Hi Guy, and welcome to the Board!

    Not me, for sure, but I have heard from experts that about 10% of their ADT patients will be the lucky ones who get the benefits but do not experience side effects. That assumes that ADT has been properly delivered, which is evidenced by a low testosterone, ideally 20 ng/dL or lower.

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 05-08-2020, 05:13 AM   #3
    Steve135
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    Re: No side effects on lupron?

    Ya not me either and I'm going on four years my muscle mass is really starting to show the results after retiring from work!
    steve


    _________________
    Diag. 56 DOB 2/59 PSA Base 1.5 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins No tPresent inked margins 5 neg pT3a,N0
    PSA 10/16 <0.1 02/7/17 1st BCR 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm tumor rt. SVB Casodex + Trelstar
    04/17 SRT (42) to include location of tumor
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/30 0.32 6/19 0.34
    7/19 0.06 8/19 0.08 9/19 0.05610/190 0.08 11/19 0.07 12/19 0.07
    7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion post SBRT 1/ 20 0.06 2/20 0.04 3/20 0.02 4/20 <.02

     
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    Old 05-08-2020, 07:02 AM   #4
    IADT3since2000
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    Re: No side effects on lupron?

    Hi Steve,

    I am convinced that exercise, especially strength type but also aerobic (and let's not forget flexibility and balance) is of great importance when we are on ADT.

    I was actually able to slightly build muscle during my second or third round of ADT, though it was difficult compared to what it was like with normal testosterone. It took a lot of gym work, 2 to 3 times a week.

    Even low levels of exercise will probably help, so do what you can. A couple of good books that have tips, including exercise, are "Invasion of the Prostate Snatchers," Scholz and Blum, "The Key to Prostate Cancer," 2018 Scholz and 29 others, and "Androgen Deprivation Therapy," 2018, Wassersug, Robinson and Walker. Walking is good if you can manage it.

    Are you exercising now?

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 05-08-2020, 01:41 PM   #5
    DaveinMaryland
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    Re: No side effects on lupron?

    I was on it for 6 months and had no significant side effects except total loss of libido. I upped my exercise and did not gain any weight. I had very mild warm flashes very occasionally. Wouldn't even classify them as hot flashes. My wife told me I would know them (hot flashes) when they occurred.

    After about 3 months off, my libido started coming back.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 Nov 2020 PSA undetectable

     
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    Old 05-08-2020, 01:52 PM   #6
    Steve135
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    Re: No side effects on lupron?

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Steve,

    I am convinced that exercise, especially strength type but also aerobic (and let's not forget flexibility and balance) is of great importance when we are on ADT.

    I was actually able to slightly build muscle during my second or third round of ADT, though it was difficult compared to what it was like with normal testosterone. It took a lot of gym work, 2 to 3 times a week.

    Even low levels of exercise will probably help, so do what you can. A couple of good books that have tips, including exercise, are "Invasion of the Prostate Snatchers," Scholz and Blum, "The Key to Prostate Cancer," 2018 Scholz and 29 others, and "Androgen Deprivation Therapy," 2018, Wassersug, Robinson and Walker. Walking is good if you can manage it.

    Are you exercising now?

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.
    Thanks Jim I will look those books up. I was walking for a while and have started again. I do lift hand weights but not a routine. I did just retire 1 year 3 months ago. I am starting a plan and will try do be more regular?
    steve

     
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    Old 05-08-2020, 08:50 PM   #7
    GuyBMeredith
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    Re: No side effects on lupron?

    I am not sure whether I am experiencing side effects. Not sure what libido is for one. Would it include mentally undressing fetching ladies and becoming aroused or is that just habit? I thought I was experiencing emotional stuff, but that may be the depression I experienced before the diagnosis.

    Caused me to wonder whether the lupron is actually reducing testosterone.
    __________________
    Diagnosed at age 73 Feb 2019 DRE indicates nodule PSA 2.8 Aug 2019 PSA 3.1 Urologist suggests biopsy in Oct Results of biopsy: 2 of 12 cores positive. Low volume T2b, intermediate risk, GS 3+4, PSA 3.10, prostate cancer, perineural invasion. Followed up with MRI to help decide between surgery and IMRT. MRI shows suspicious PIRADS 5 lesion measuring 2.cm in diameter, with associated left neurovascular bundle involvement. Started 6 month lupron series Feb 2020, 28 sessions of high dose IMRT Apr 15, 2020. Sexual functions okay except ejaculate has changed. Without libido it is an academic process that requires much focus. July 27 first measure of PSA and total testosterone. PSA: .13 ng/dl Total testosterone is less than 12 ng/dl.

     
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    Old 05-08-2020, 10:23 PM   #8
    guitarhillbilly
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    Re: No side effects on lupron?

    Ive been on Lupron for 5 months and the hot flashes for me are very real. After 1st month had About 5-7 PER DAY and now they are 3-4 most days.
    Mild Fatigue and a Flat Tire are the other side effects that I have.
    I don't see how the Testosterone production can be shut down and not have effects on the body.
    A co worker told me that he experienced increased blood sugar levels and his UR put him on Metformin. Some studies show that Metformin is good for folks on ADT anyway even without blood sugar issues.
    __________________
    T2a / Gleason Score 8 / PSA at Diagnosis 6.9 /
    1-5 aggressive score : 4
    12 cores= 4 positive
    NBS = Negative
    Pelvic CT= Negative
    Pelvic MRI= Negative
    Age at Diagnosis= 60-65 age group
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years [Started DEC 2019]

     
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    Old 05-09-2020, 07:39 AM   #9
    DaveinMaryland
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    Re: No side effects on lupron?

    Loss of libido (sex drive).

    While on my 6 month ADT I joked that they could have passed a law making all women walk around naked and all I would have cared about was whether they would be cold.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 Nov 2020 PSA undetectable

     
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    Old 05-11-2020, 12:03 PM   #10
    IADT3since2000
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    Re: No side effects on lupron?

    Quote:
    Originally Posted by GuyBMeredith View Post
    .

    Caused me to wonder whether the lupron is actually reducing testosterone.
    Your testosterone level should be regularly tested while on ADT, though my impression is that an unfortunately large proportion of docs neglect this.

    Jim

     
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    Old 05-11-2020, 05:00 PM   #11
    DaveinMaryland
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    Re: No side effects on lupron?

    Quote:
    Your testosterone level should be regularly tested while on ADT, though my impression is that an unfortunately large proportion of docs neglect this.
    Is there any medical protocol for this for a 6 month shot?

    I never really thought of any need for it. My uro told me how it will work. It takes 2 weeks to kick in because of the way it works. It will spike up then drop.
    What does it matter what it drops to? It will be near zero or low enough to be essentially zero. It's not like it is going to fluctuate. Then after the 6 months it will recover. You'll know when it recovers to a level that you can tell.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 Nov 2020 PSA undetectable

     
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    Old 05-11-2020, 11:19 PM   #12
    GuyBMeredith
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    Re: No side effects on lupron?

    Again, Dave, I am/was not sure that I am experiencing effects of testosterone loss two months in. The RO says not to worry, but a test would be welcome. This experience is very confusing so all information is welcome.
    __________________
    Diagnosed at age 73 Feb 2019 DRE indicates nodule PSA 2.8 Aug 2019 PSA 3.1 Urologist suggests biopsy in Oct Results of biopsy: 2 of 12 cores positive. Low volume T2b, intermediate risk, GS 3+4, PSA 3.10, prostate cancer, perineural invasion. Followed up with MRI to help decide between surgery and IMRT. MRI shows suspicious PIRADS 5 lesion measuring 2.cm in diameter, with associated left neurovascular bundle involvement. Started 6 month lupron series Feb 2020, 28 sessions of high dose IMRT Apr 15, 2020. Sexual functions okay except ejaculate has changed. Without libido it is an academic process that requires much focus. July 27 first measure of PSA and total testosterone. PSA: .13 ng/dl Total testosterone is less than 12 ng/dl.

     
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    Old 05-12-2020, 05:38 AM   #13
    IADT3since2000
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    Re: No side effects on lupron?

    Quote:
    Originally Posted by DaveinMaryland View Post
    Is there any medical protocol for this for a 6 month shot?

    I never really thought of any need for it. My uro told me how it will work. It takes 2 weeks to kick in because of the way it works. It will spike up then drop.
    What does it matter what it drops to? It will be near zero or low enough to be essentially zero. It's not like it is going to fluctuate. Then after the 6 months it will recover. You'll know when it recovers to a level that you can tell.
    The drop matters and needs to be measured for two reasons:

    (1) Flaws in delivering the dose can occur, especially if the staff is less experienced. Possible flaws I recall learning about include improper mixing, improper storage, delivery into fat instead of muscle (in the butt) and improper insertion of the coil (stomach, as for Zoladex).

    (2) Unusual, but not rare, patient biology where the dose is used up faster than it is supposed to be.

    Either of these problems will lead to an inadequate dose level in the body. I've heard experts say that they encounter this in about 10% of the men they treat, but it is possible they see more of the problem cases with a higher percentage of inadequate dosing.

    It is also very important to measure DHT (dihydrotestosterone), a more potent prostate cancer fuel than testosterone, and quite capable of wrecking an ADT program if not adequately suppressed. It should be measured in the same blood draw until the doctor is satisfied that it is being adequately suppressed.

    Your uro gave you the general concept of the way it should work, but he really needs to be measuring T and DHT and hopefully is doing that. It is my impression that uros are less knowledgeable, generally, about drugs than oncologists and tend to be less aware of the problems, so it would be wise for you to ask. If you aren't being so tested, you should ask for these tests, in my layman's opinion.

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 05-12-2020, 05:39 AM   #14
    DaveinMaryland
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    Re: No side effects on lupron?

    Your uro should have given you information on possible sides effects.
    Mine told me the possibilities.

    More common: hot flashes, weight gain, muscle mass loss, loss of libido, fatigue
    Less common: breast tenderness, moodiness

    In preparation I changed my diet and exercise routine. I dropped 10 lbs but never put it back on. I upped my exercise routine to work the major muscle groups using elastic bands. I did not notice any muscle mass loss.

    Like I said, I experienced very mild side effects. I think increasing the exercise played a role. I was also going through radiation for months 2 and 3 of the 6 month course and experienced few side effects from that. After completing radiation I added a 1 to 2 mile walk daily.

    Take the advice of your uro and don't be concerned. Knowing your testosterone level for the 6 month period is pretty meaningless. You can't do anything about it, so spend your time and energy elsewhere. You'll come out of it OK.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 Nov 2020 PSA undetectable

     
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    Old 05-12-2020, 09:11 AM   #15
    GuyBMeredith
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    Re: No side effects on lupron?

    My urologist is good about providing information. Both she and the RO have been patient with my endless questions. I also went to OHSU's cancer group to ask about ADT. I can guarantee that the last lupron injection was on target--painful enough that I joked she had hit bone.

    I am a bit miffed right now as the urology group has failed to return 2 calls with queries about testing testosterone. I will be making an appointment.
    __________________
    Diagnosed at age 73 Feb 2019 DRE indicates nodule PSA 2.8 Aug 2019 PSA 3.1 Urologist suggests biopsy in Oct Results of biopsy: 2 of 12 cores positive. Low volume T2b, intermediate risk, GS 3+4, PSA 3.10, prostate cancer, perineural invasion. Followed up with MRI to help decide between surgery and IMRT. MRI shows suspicious PIRADS 5 lesion measuring 2.cm in diameter, with associated left neurovascular bundle involvement. Started 6 month lupron series Feb 2020, 28 sessions of high dose IMRT Apr 15, 2020. Sexual functions okay except ejaculate has changed. Without libido it is an academic process that requires much focus. July 27 first measure of PSA and total testosterone. PSA: .13 ng/dl Total testosterone is less than 12 ng/dl.

     
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