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    Old 05-28-2020, 01:34 PM   #1
    MarkBFlorida
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    Adt

    Starting my first shot of FIRMAGON (degarelix) on Mon 6-1-20. any recommendations
    I was diagnosed My 2018 Gleason 6 3+3 was on surveillance. 12 core 1 core pos 2%
    mri 1.5t showed an 8mm lesion around where the core was taken

    may/2020 3t mri showed same leison now 12mm and a second 7mm in right mid only now my gleason is a 9
    3 cores at 45% no extra extention
    bone scan coming up in a couple days.
    scared not sure what to do next

     
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    Old 05-28-2020, 05:43 PM   #2
    DjinTonic
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    Re: Adt

    Hi Mark. I'm sure this was quite the shock for you. While you are awaiting the imaging and starting to do your research and make plans, you could get a 2nd opinion on your last biopsy slides by having your doc send them to Dr. J. Epstein at JH.

    Have you decided on radiation? I'm note sure why you would have started ADT otherwise.

    After my G10 (5+5) biopsy report, however, I did not bother with a 2nd opinion -- even a slight downgrade would have kept me in the high-grade category -- and it was obvious I needed treatment.

    The next question will be whether your PCa is currently prostate-confined. The bone scan and additional imaging (e.g. CTs) will help with that.

    If the best estimate is prostate-confined disease (not that unlikely, since you were being monitored and may have "caught" the G9 early), the choices usually come down to

    (1) RT (of one ore more kinds) plus ADT, or
    (2) Surgery. In the case you opt for a RP:

    (2a) If you are lucky (as I was) and have no adverse findings afterwards (a stage pT2 post-op diagnosis with no positive surgical margins) and an undetectable PSA after surgery, you would not have to do RT or RT + ADT until/unless your PSA comes back in the future (which would be "salvage treament"). As best I can determine, with high-grade PCa that is thought to be prostate-confined, the chances for this outcomes may be 25%, but you can ask your docs about this, of course.

    (2b) You have a PT3 diagnosis (cancer not prostate-confined) after surgery, have a positive surgical margin, or have persistent PSA after surgery, "adjuvant treatment" (RT or RT + ADT) would be advised.

    Take advantage of this time when you are in the diagnostic phase to do your research. If you are open to both treatments, meet with and interview both surgeons and radiation oncologists. However, you don't want to procrastinate too long. If you choose an RP, most surgeons like to wait at least a month after the biopsy for healing; and I would suggest you have the surgery somewhere around or before the 2 month mark.

    Others will surely come along with much advice.

    Keep us posted and all the best,

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)0.015 (1 yr. 6 mo.)0.015 (2 yr. 4 mo.)

     
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    Old 05-28-2020, 07:03 PM   #3
    Southsider170
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    Re: Adt

    Quote:
    Originally Posted by MarkBFlorida View Post
    Starting my first shot of FIRMAGON (degarelix) on Mon 6-1-20. any recommendations
    I was diagnosed My 2018 Gleason 6 3+3 was on surveillance. 12 core 1 core pos 2%
    mri 1.5t showed an 8mm lesion around where the core was taken

    may/2020 3t mri showed same leison now 12mm and a second 7mm in right mid only now my gleason is a 9
    3 cores at 45% no extra extention
    bone scan coming up in a couple days.
    scared not sure what to do next
    The purpose of the bone scan us to stage the disease. If its confined to prostate, then curative measures will be recommended to you.

    The idea of the ADT shot is to make radiation more effective. That seems what they want to recommend to you provided your bone scan comes back as a potentially curable case.

    Since you are going to be getting the ADT shot on 1 June, you can pencil in a date of maybe 1 August for the start of your radiation protocol, if that's what he going to recommend.

    Get Dr. Patrick Walsh's tome on prostate cancer. I bought a copy online 6 years ago for $10 as a trade paperback.

    There are different radiation protocols, different kinds of external radiation, seeds, protons.

    Your case is of some concern, but it isn't time to panic yet.

     
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    Old 05-28-2020, 07:24 PM   #4
    DjinTonic
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    Re: Adt

    Quote:
    Originally Posted by Southsider170 View Post
    The purpose of the bone scan us to stage the disease. If its confined to prostate, then curative measures will be recommended to you.

    The idea of the ADT shot is to make radiation more effective. That seems what they want to recommend to you provided your bone scan comes back as a potentially curable case.
    .....
    [Emphasis mine]

    "Seem what they want to want to recommend, provided that..." ??????? Why schedule a Lupron shot before the diagnostic phase is complete? Did Mark agree? I'm not sure he's is even in a position to weigh treatments at this point, let alone make a decision.

    He said he is scared and doesn't know what to do next. Why is he getting a shot? Is this a treatment plan reached by joint decision-making??? Does Mark know the modality/modalities of the RT if already planned? Perhaps Marks an provide more details.

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)0.015 (1 yr. 6 mo.)0.015 (2 yr. 4 mo.)

     
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    Old 05-29-2020, 03:27 AM   #5
    MarkBFlorida
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    Re: Adt

    sorry for the confusion
    My DR is a urologist with the VA veterans admin.
    my last 12 core biopsy showed 3 core pos 45% Gleason 9 when i was Gleason 6 about a year ago
    the urologist called saying surgery, surgery, NOW is what most people due.
    as you can imagine my shock i needed to take a step back to quickly consider options and review my research.
    I also suggested i did not want surgery and Dr thought surgery my not be on the table anymore either due to Gleason 9

    An mri 3t a few weeks earlier indicated it was contained in the prostate no lymp or bone metastases
    I was looking at ADT the DR suggested FIRMAGON. as it may hold the pc in check i dont know
    I had been always leaning toward SBRT or seeds as a treatment plan for the future not knowing how quickly it progressed PSA is 7,5 it was 5-6 at first biopsy in 2018

     
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    Old 05-29-2020, 05:41 AM   #6
    DjinTonic
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    Re: Adt

    If the PCa is prostate-confined, you definitely want to treat it with a curative intent, which ADT alone won't do, of course. SBRT isn't the typical RT modality for high-risk disease, which is typically EBRT with a brachy boost. In any case, here are some recent studies:

    Stereotactic body radiation therapy with androgen deprivation therapy for unfavorable-risk prostate cancer (2020)

    https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.6_suppl.332

    ___________________

    Stereotactic radiotherapy+/-HDR boost for unfavorable-risk prostate cancer: Comparison of efficacy, survival, and late toxicity outcomes (2020)

    https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.6_suppl.372

    ____________________

    Stereotactic body radiotherapy boost toxicity for high and intermediate-risk prostate cancer: Report of a multi-institutional study (2020)

    https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.6_suppl.365

    ________________________

    There is also a comparison trial underway:

    A Randomized Phase II Trial of Prostate Boost Irradiation With Stereotactic Body Radiotherapy (SBRT) or Conventional Fractionation (CF) External Beam Radiotherapy (EBRT) in Locally Advanced Prostate Cancer: The PBS Trial (NCT03380806)

    https://www.sciencedirect.com/science/article/abs/pii/S1558767319303933

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)0.015 (1 yr. 6 mo.)0.015 (2 yr. 4 mo.)

     
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    Old 05-29-2020, 10:59 AM   #7
    Prostatefree
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    Re: Adt

    Quote:
    Originally Posted by MarkBFlorida View Post
    sorry for the confusion
    My DR is a urologist with the VA veterans admin.
    my last 12 core biopsy showed 3 core pos 45% Gleason 9 when i was Gleason 6 about a year ago
    the urologist called saying surgery, surgery, NOW is what most people due.
    as you can imagine my shock i needed to take a step back to quickly consider options and review my research.
    I also suggested i did not want surgery and Dr thought surgery my not be on the table anymore either due to Gleason 9

    An mri 3t a few weeks earlier indicated it was contained in the prostate no lymp or bone metastases
    I was looking at ADT the DR suggested FIRMAGON. as it may hold the pc in check i dont know
    I had been always leaning toward SBRT or seeds as a treatment plan for the future not knowing how quickly it progressed PSA is 7,5 it was 5-6 at first biopsy in 2018
    Get yourself to a cancer center of excellence. You're in over your head. The VA lacks the services to manage your care, imo. If I understand correctly, you can now out source your VA care to access better care.

    You're acting like your shopping for something. Get yourself to competent care and take it. We can help get you back on track here, but you need doctors on the otherside saying the same thing.

     
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    Old 05-29-2020, 03:26 PM   #8
    MarkBFlorida
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    Re: Adt

    Yes I agree 100%
    But VA is my only insurance
    You can only be referred out if they say
    And c ovidis stopping everything

     
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    Old 05-30-2020, 06:07 AM   #9
    Prostatefree
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    Re: Adt

    Quote:
    Originally Posted by MarkBFlorida View Post
    Yes I agree 100%
    But VA is my only insurance
    You can only be referred out if they say
    And c ovidis stopping everything
    You have to ask clearly, firmly, and repeatedly. Do not argue, explain or defend. Just repeat the request, and if denied asked what your next option is to pursue your very serious, urgent and real request. A request which is not going away. The basis for the request is the VA can not provide the standard of care you require.

    It is by talking with someone who provides the services you require you then build a request (case) for them. Your case!

    One service you require is a 3T MRI and the experienced staff to read it and develop a treatment plan with it's information.

    Pick a cancer center near you and reach out for guidance on Clovid restrictions and VA standards of care compared to the private sector in your area. If Clovid restrictions are still a problem the cancer center can guide you through it better than the VA. Clovid doesn't change this move for you. It can all be done online via video conferencing.

    Trying to figure this out on your own doesn't work. Making medical requests of your current team based on your own internet searching, some of which may not be accepted protocol for your case, isn't going to work. Get lost in the weeds and they will dismiss you as an internet crackpot or some other easy to argue excuse. Find a center, an advocate, and get started.

    https://www.stripes.com/va-to-expand-veterans-access-to-private-medical-care-1.584717

    Do you have a VA community you can access to direct you to an advocate who can help make this happen? Someone who has done this already or helped someone do this?

    The risk is the details of managing your care can overwhelm you in the face of a serious health issue. It creates a swirl leading to a feeling of confusion and a feeling of resignation often resulting in inaction. Remind yourself these are feelings, not facts in your case. Set the feelings aside. They've done their job to get your attention. Now start to plan and take actions. You're not stuck. It only appears that way.

    Remember the book, "The 7 Habits of Highly Effective People"? Rule #1 - in the face of all else, take action. Not any action, but one that will make a difference.

    I'll bet you're not the first in your area. Call the cancer center of excellence nearest you. Research the one with the most PCa experience. I'll wager they've been through this before and can advise you.

    Report back to us.

     
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    Old 06-01-2020, 08:47 AM   #10
    IADT3since2000
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    Re: Adt

    Hi Mark B, and I'll add my own welcome to our group!

    I have read all the prior responses and will add just a few thoughts from my own perspective as a 20 1/2 year survivor of a once life-threatening case, managed at first with intermittent triple ADT until technology improved, then with advanced imaging and advanced radiation supported by a fourth round of ADT.

    There are some excellent prostate cancer doctors in Florida, as you might expect based on the demographics. How is your VA? I am aware that some are excellent and others are poor, with many in between. Dr. Donald Gleason, developer of the Gleason score that is used worldwide and is the basis for a recent, modern scoring system, was a VA doctor.

    I'm glad you are on Firmagon/degarelix. I'm hoping your injection is done with proper care to minimize pain and discomfort. There is a technique for that, involving, as I recall from study, icing at the site, a slow rather than fast injection, and at least one other step. If you feel like you got punched in the gut, then you did not get that extra care that is important, but you can study up and find someone (or educate them) to deliver that care next time. I never had a Firmagon injection, always the old standard, Lupron, instead. Firmagon does a much better job because it shuts down testosterone much faster and deeper. That's especially important with the possibility of a cancer that may metastasize or mutate at a fast clip. Once T has been decreased to the desired low level, the doctor may opt to put you on Lupron or one of the other older drugs, which will work very well for maintaining that low level.

    Are you getting a blood test also for DHT (dihydrotestosterone)? It is a far more potent fuel for cancer than T and also needs to be decreased to a very low level, ideally 5 or lower (with T at <20). For many of us, it decreases as
    T decreases because DHT is made from T. However, for a few of us, there is still a dangerously elevated DHT despite a T of <20. In that case, other drugs are needed.

    Often a combination with an "antiandrogen" drug is also employed. Has that been discussed?

    I am a big fan of radiation with ADT for men with higher risk cancer. Surgery is sufficient for some high-risk men, but the odds have proven substantially better with radiation plus ADT in the modern era, and, personally, I am convinced the side-effect profile is substantially better with radiation plus ADT. An excellent book that covers surgery and radiation is "The Key to Prostate Cancer", 2018, Dr. Mark Scholz, MD, a medical oncologist, plus 29 others.

    Good luck!

    .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 06-04-2020, 02:41 AM   #11
    MarkBFlorida
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    Re: Adt

    thank you so much for you wisdom
    yes Firmagon was handled with care
    both shots simultaneous not bad at all 240 mg total load
    a couple days later welts with pain but again not too bad
    Had a bone scan, no results yet but i suspect not good news.
    The MRI and biopsy both mentioned no extraprostetic extension, and no lymp node, PSA 7.5 so i guess that is some hope

     
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    Old 06-13-2020, 03:28 PM   #12
    MarkBFlorida
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    Re: Adt

    thank you for your suggestions

     
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    Old 06-29-2020, 08:35 AM   #13
    Shueswim
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    Re: Adt

    Mark - I just finished 18 months of Firmagon shots. One important tip I learned is that the person giving you the shot needs to do so very slowly. Per the directions on the Firmagon website, the medication is to be released over a 30 second time period. I never though the shot itself was painful...but the reaction at the site of injection certainly was. After a few months in which they administered the shot too quickly, I researched the Firmagon website and discovered they were injecting too fast. Ever since I brought the directions printed at the Firmagon site. The slower injection time (and cold compresses) made a world of difference.

    Gene

     
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    Old 06-30-2020, 04:59 AM   #14
    IADT3since2000
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    Re: Adt

    Welcome to the Board Shueswim!

     
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    Old 06-30-2020, 05:38 AM   #15
    DjinTonic
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    Re: Adt

    Welcome, Shueswim, to the Place Where You'd Rather Not Be! Feel free to tell us your prostate-cancer journey and create a "signature" with your salient history that will be appended to each of your posts.

    We all learn from each other's history, choices, results, and current status, and opinions, so add yours, if you like, and any thoughts or questions you may have.

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)0.015 (1 yr. 6 mo.)0.015 (2 yr. 4 mo.)

     
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