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    Old 06-22-2020, 06:31 PM   #1
    Web530
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    Take Lupron or avoid it?

    I'm 72, diagnosed May 2020, Gleason 4+3, perineural invasion (PNI), Gleason grade 4 comprised 75% of tumor. CT scan negative, but was done without contrast. Bone scan negative. Awaiting MRI with contrast. My radiation oncologist wants me to start Lupron 30 mg 4-month dose now, then one month after injection begin 2 months of EBRT. My problem is that I have read the warning label issued by the FDA on Lupron injections, it states that physicians should counsel patients with preexisting comorbidities that the drug can cause sudden cardiac death, myocardial infarction, and stroke (my urologist made no mention of this). I have coronary artery disease, survived "the widow maker" heart attack and had triple-bypass 4 years ago, have a 4.7 cm ascending aortic aneurysm (stable), have stage 4 chronic kidney disease, and Crohn's disease with an ileostomy. Prior to Covid I was attending exercise classes at the gym twice a week and bowling twice a week, consider myself fairly active. I'm on the fence about the Lupron, considering my pre-existing illnesses.

    Is there anyone who has had the worst side effects like developing diabetes, bone loss or fracture, heart attack, stroke? Or, has your experience been tolerable? I understand it won't be a picnic, but I'd rather not die from the drug! Does anyone understand my fear?

     
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    Old 06-22-2020, 08:18 PM   #2
    GuyBMeredith
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    Re: Take Lupron or avoid it?

    Hi Web,

    I'm just a short timer, finishing 4 months into 6 months of lupron. There are more experienced men who will probably chime in, but I believe all the heavy duty side effects happen with long term lupron treatment. I have an ascending aneurysm almost identical to yours. Depression.

    Make sure you have a good conversation with your doctor and a second opinion never hurts.

    My RO said 6 months lupron, begin 28 high dose sessions IMRT at about 6 weeks. I didn't like the idea of lupron so got a second opinion from OHSU where I was told I didn't need lupron. I decided to go for it anyway since they are all playing statistics and odds and I decided on the best odds for my situation.

    Everyone reacts differently with the meds. For myself, maybe lost libido though I am 74 and may not have had libido coming in. I neglected to take notes before I started so have no point of reference. Maybe I'll find out after treatment. At about 3 months, warm flashes. Emotional days. Very emotional days sometimes. Coming in with depression probably didn't help.

    I was hoping that the promised loss of libido would help me through my terror of becoming aroused during exams, but found I was still feeling arousal for quite a while. Perhaps still am, but got over some of the anxiety.

    There are reports that ADT with IMRT increases chance of impotence. I suspect it is due to failure to have erections to bring blood into erectile tissue to keep it healthy so I'm on a regimen of at least one erection a day, some orgasms. See my query on penile skin condition, though.

    I was going to say that the list of side effects doesn't mention shift in thinking, but I did see warnings of personality changes. One thing that I've experienced is a change in view of what is important in treatment. Sometimes I think worrying about retaining sexual function at this age isn't worth it (who wudda thot it'd be boring), but keep it up because world view may change again after treatment and I want to make sure I have the chance to make choices then.
    __________________
    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

    Side effects, loss of libido, emotional, infrequent warm flashes. The emotional side seems most obvious. Sexual functions okay except ejaculate has changed and without libido it is an academic process that requires much focus.

     
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    Old 06-23-2020, 03:40 AM   #3
    Steve135
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    Re: Take Lupron or avoid it?

    Your a young 72 and we all want to get the most out of life! Take those side affects with a grain of salt. Those in trial studies that are affected with all the side affects listed aren't know to have gotten it from the medication Then it may have been just one out of 10,000. I would do as recommend by doctors keep and real good intrest in your own health. If you are otherwise in good healt take the meds as long as you can stand them. I've been on those same type drugs for more than two years radiaton and have moved on to more advance drugs that are just kicking my ***. I'm currenly 61 and have just reach the 5 year mark of this journey!
    My dad was treated in his early eighties and the PCa came back and was re treated. He fianlly said stop leave me alone. His PSA is off the charts and they can't find Cancer anywheres and they are dumbfounder by it. He will be 94 in September with no treatments. And still has a very active life! Make an educated choice and be happy with your life.
    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 5/20 <0.02

     
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    Old 06-23-2020, 05:46 AM   #4
    guitarhillbilly
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    Re: Take Lupron or avoid it?

    I chose to take Lupron [6 month injections] for at least one year. My UR and RT MD want me to stay on Lupron for 2 years. Just had my 2nd injection about 2 weeks ago and so far so good. Had a few short term side effects from the 2nd injection that were annoying. I started Lupron 3 months before my RT which is suppose to make the RT more effective [ in theory smaller prostate and greatly reduced PCa fuel supply]
    Mainly on a regular basis for me its Hot Flashes- Mild Fatigue- Muscle Loss [exercise and weights help]- No interest in sexual intercourse- and Lupron shrinks Everything in my case.
    Only You [and your spouse if applicable] should and can make the decision to use Lupron with RT once offered or recommended by a MD.
    Each individual has to weigh out the risks of each treatment method or choosing no treatment.
    __________________
    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
    Completed 42 IMRT Sessions
    Lupron scheduled for 2 years

     
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    Old 06-23-2020, 08:24 AM   #5
    DaveinMaryland
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    Re: Take Lupron or avoid it?

    I had an RP in May 2017. Came through it with flying colors with a quick recovery. 5 months to complete urinary control. Had recurrence verified November 2018.
    Under recomendation from RO had 6 month Lupron shot at the end of December and started salvage radiation the end of January and completed it in mid March.

    I had minimal side effects from the radiation and the Lupron. A bit of fatigue and very occasional "warm" flashes, not hot flashes. I did not gain weight, lose significant muscle mass, or suffer any of the typically listed side effects. I did lose my libido. I used to joke that if they passed a law that all women had to walk around naked, all I would care about is that they would get cold.

    I am in pretty good shape and upped my exercise routine to counter any possible weight gain. I dropped 10 lbs and never gained it back. I exercise every day and walk every day 1 to 2 miles.

    I just had my 15 month post radiation PSA check and it is undetectable.

    That is my experience.
    __________________
    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 PSA undetectable

     
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    Old 06-23-2020, 11:29 AM   #6
    GuyBMeredith
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    Re: Take Lupron or avoid it?

    Good news, Dave. Looking forward to understanding how it is monitored post IMRT as I understand it may be a matter of relative levels rather than absolute.

    Thanks for the reminder, Guitarhillbilly. I forgot to mention my amazing shrinking testicles. One more side effect.
    __________________
    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

    Side effects, loss of libido, emotional, infrequent warm flashes. The emotional side seems most obvious. Sexual functions okay except ejaculate has changed and without libido it is an academic process that requires much focus.

     
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    Old 06-24-2020, 02:17 PM   #7
    IADT3since2000
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    Re: Take Lupron or avoid it?

    Hi Guy and welcome to the Board!

    It’s good to see you are getting a variety of views.

    I was on Lupron intermittently for 87 months, with my longest course of 31 months at the start (more detail with my signature below).

    There are quite a few possible side effects with Lupron, but they vary from patient to patient, and usually each that is a substantial bothersome burden for a patient can be countered, at least to some extent.

    The cardiovascular side effects that you are most concerned about usually can be reduced or avoided with some tactics. One is the drug metformin, an old and heavily studied drug approved for diabetes, that reduces some Lupron side effects as well as, we currently believe, improving the results of radiation. (If you search this board for metformin, you will see threads and posts about it.) Exercise also appears to be an excellent countermeasure, if you can manage to do it. The two best books I know of about countering side effects of Lupron and other ADT (Androgen Deprivation Therapy) drugs are “The Key to Prostate Cancer,” Dr. Mark Scholz, MD, and 29 others, especially Chapter 30, 2018, and “Androgen Deprivation Therapy, 2nd Edition,” Wassersug, Robinson and Walker, 2018. (Dr. Scholz refers to ADT as TIP, which is an awkward term that stands for Testosterone Inactivating Pharmaceuticals – that’s another story, interesting academically but not relevant about what action to take.) It would be wise to talk to your cardiologist about your concern. I would be interested whether he knows about the role of metformin and its effect on the “metabolic syndrome.”

    Dr. Charles “Snuffy” Myers, MD, an expert medical oncologist who dedicated his large practice to prostate cancer but is now retired, believed that fish oil (and fish) were very good for reducing the risk of sudden death from heart attack. (He had metastatic prostate cancer himself, and was on Lupron for 19 months, so he took a quite personal interest in this.) I eat a lot of fish and have taken fish oil capsules for two decades. Dr. Myers strongly advocated for use of metformin to counter side effects of Lupron, basing this on research.

    There has been a ton of research on ADT and its side effects.

    I hope what you are learning here helps, and please continue to follow up

    ….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 and stable at <0.01 (June 5, 2020); apparently cured. (Current T 99 6/5/20.) 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 06-29-2020, 02:36 PM   #8
    noonereal
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    Re: Take Lupron or avoid it?

    The only problem I had with it was that it hurt my kidneys.

     
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