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    Old 07-06-2020, 07:33 PM   #1
    Atwack
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    Newbie just found this board

    hello, I am delighted to have found this forum as it is very good to hear the voices of those who are walking or have walked the path that I am on. For me, an increasing PSA of 3.7 was seen in routine blood work in fall of 2019. I have a history of BPH (TURP in 2012) so we monitored to spring. Still increasing so MRI determined a suspicious activity. Subsequent biopsy (18 core samples) showed 5 significant areas. 4 were Gleason 3+4. One was 4+4. Therefor, high risk PCa. Started ADT in late April with Casodex? followed 4 weeks later with Leuprolide 6 month shot. ADT is to go for 2 years; IM/IGRT simulation is July 7th with expected RT duration of 9 weeks. I am really interested to hear any opinions or advice regarding ADT side effects and IM/IGRT. I have been reading previous posts. So, thanks to all who have shared their experience.

    I haven't really experienced many side effects of ADT. Skin rash on wrist and yeast infection under left arm pit that was easily treated with prescribed cream.

     
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    Old 07-07-2020, 05:22 AM   #2
    IADT3since2000
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    Re: Newbie just found this board

    Hi Atwack and welcome to the Board!

    You are on a good course - all makes good sense. Modern, image guided radiation with ADT of a proper duration (18 months to two years seems wise) results in high odds of success.

    Some of us have few side effects of ADT but reap the full benefits, and it appears you are in that group, though more side effects could occur. Is your bone mineral density being monitored? ADT gradually decreases bone density, unless countered, because men need a little estrogen to maintain density normally, and ADT, by decreasing testosterone, decreases estrogen as it is made in men from testosterone. The accepted practice is to check density with a DEXA scan and then use a medication (several available) of appropriate strength to maintain density, plus calcium and vitamin D3 supplementation. If not countered, the risk of bone fracture increases.

    Some of us would be happy to answer questions on side effects, but there are two excellent, recent books available. "The Key to Prostate Cancer", 2018, by Dr. Mark Scholz, MD, a leading medical oncologist practicing near LAX with a large number of prostate cancer patients, many with advanced cases, and 29 others, mostly experts. A key feature of the book is tailoring content to one of fifteen different groupings (with chapters in a modular design so you don't have to read it all), far more than the traditional low-, intermediate- and high-risk groups. I cannot recommend this book highly enough. Chapter 30, pp. 239-246, addresses reducing side effects from ADT; it is written by Dr. Scholz, a medical oncologist who is expert in managing these side effects. He refers to ADT as TIP - it means the same thing as ADT. You should recover your testosterone once you finally stop ADT; I did not, probably due to being on ADT intermittently for 87 months and being just over 70 when my fourth course of ADT - that one in support of radiation - ended.

    The second is "Androgen Deprivation Therapy, 2nd Edition", 2018, by Wassersug, Robinson and Walker, which is outstanding for patients facing and undergoing ADT. It is particularly strong on countermeasures to minimize or even avoid side effects of therapy. It is unlikely that many of us will be able to entirely avoid side effects, or even reduce some to a mild level, but this book is great on what can be done and what to expect.

    The books also address radiation side effects, which in the vast majority of cases are much less burdensome than those of surgery. Most of us will experience urinary and bowel urgency when we get several weeks into treatment. (I never had an "accident" while trying to get to the toilet, but it was often close; I did get adequate warning of the need to go.) Most of us will experience fatigue when we get well into the course of treatments, and I welcomed a daily nap, which was unusual for me. The side effects from the radiation itself go away fairly quickly. Some of us develop long-term side effects due to scar tissue from the radiation. Usually, those develop slowly, sometimes after several years. However, with modern, image guided radiation, especially with a long course of treatment (as compared to a shorter course with higher doses, which is also safe and effective), the odds of long-term side effects are extraordinarily low, according to research. Personally, I am doing very well at seven and a half years since radiation - no urinary issues, and with mild bowel urgency a couple of predictable times a day becoming even milder - hardly noticeable.

    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 and stable at <0.01; 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 07-08-2020, 06:50 AM   #3
    Terry G
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    Re: Newbie just found this board

    Increased physical activity including both cardio and strength exercises has shown to be very effective in reducing the side effects of ADT.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6

     
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    Old 07-08-2020, 10:54 PM   #4
    Insanus
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    Re: Newbie just found this board

    With 5/18 cores I would have tried surgery with a pathology report before I bought in to Lupron for 2 years.

     
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    Old 07-09-2020, 05:32 AM   #5
    IADT3since2000
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    Re: Newbie just found this board

    I'll add an "Amen!" to Terry G's post.

    For years before diagnosis I did regular and often intense aerobic exercise, and I resumed that after the winter ended in early 2000 after the shock of diagnosis eased. At that time the value of strength exercise for ADT patients (and a lot of other folks, including females) was not as well recognized. (Weight/resistance exercise had been dominant until aerobics came along, and then was eclipsed for years until reemerging.) Drs. Myers, Strum, Scholz and other leaders in prostate cancer treatment and side effect management all advocated strength exercise as well, and I soon added that.

    Research indicates that exercise helps in several ways, at least including avoiding or minimizing fatigue and depression, enhancing mental alertness, and fostering bone and cardiovascular health. There are other important benefits. During more than 80 months of ADT intermittently, I did not experience fatigue or depression, except for initial weeks of feeling low after diagnosis, which was no doubt due to the diagnosis rather than starting ADT. I worked at a mentally challenging job for four years after diagnosis and did well.

    The old diabetes drug metformin seems to do quite a bit of good in helping patients minimize or avoid some of the side effects of ADT as well as enhancing the effectiveness of radiation. An arm of the UK’s STAMPEDE trial is putting the latter to the test. You can search the board for prior posts about metformin, or, if you wish, ask questions.

    With appropriate use of countermeasures, two years of ADT will probably be quite tolerable for you. Without the countermeasures, it could get rough, though you seem at this point to be one of the luckier among us.

    ….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; 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 07-09-2020, 06:15 AM   #6
    DjinTonic
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    Re: Newbie just found this board

    I think Insanus was pointing out that with your majority of G7 (3+4) biopsy cores and low PSA value, there was a very reasonable chance your G8 biopsy would have been downgraded to a definitive Gleason score of 7 (3+4) after RP and/or confirmed as prostate-confined.

    This downgrading of G8 (4+4) is very common when there is pattern 3 in the biopsy cores because it doesn't take much of the 3 to make it the 2nd-most prevalent pattern across the whole prostate. Downgrading is not a result of biopsy grading errors -- the biopsy can only look at the pattern distribution in the tissue removed.

    Most Gleason 8 Biopsies are Downgraded at Prostatectomy—Does 4 + 4 = 7? (2018)

    https://www.sciencedirect.com/science/article/abs/pii/S002253471777718X

    Quote:
    Conclusions
    Downgrading Gleason 8 biopsies is common. Patient evaluation based on Gleason 8 biopsies often results in overestimating progression risk and disease extent, which may lead to overtreatment.
    [Emphasis mine]

    Should All Prostate Needle Biopsy Gleason Score 4 + 4 = 8 Prostate Cancers Be High Risk? Implications for Shared Decision-Making and Patient Counselling (2020)

    https://pubmed.ncbi.nlm.nih.gov/31791703/

    Quote:
    Conclusions: Men with low volume Gleason 8 (4 + 4) and/or the presence Gleason pattern 3 on prostate needle biopsy often have their tumors downgraded at radical prostatectomy. The presence of these preoperative biopsy parameters could affect pretreatment counseling and impact patient management.
    You did not mention what your workup imaging estimated in terms of prostate-confined status. (Regardless of the final grade, a reasonably good post-op path report and undetectable PSA would have meant no further treatment unless needed at a later point).

    I'm wondering whether an advanced scan could help decide whether such a long ADT treatment after RT is warranted. A genomic test on your biopsy slides could also estimate the likelihood your cancer is high risk for metastsis.

    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, negative 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-specific mortality: 3.3%
    uPSA: 0.010 (3 mo.)...0.013 (2 yr. 10 mo.)

     
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    Old 07-09-2020, 08:11 AM   #7
    guitarhillbilly
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    Re: Newbie just found this board

    Quote:
    Originally Posted by IADT3since2000 View Post
    I'll add an "Amen!" to Terry G's post.


    The old diabetes drug metformin seems to do quite a bit of good in helping patients minimize or avoid some of the side effects of ADT as well as enhancing the effectiveness of radiation. An arm of the UK’s STAMPEDE trial is putting the latter to the test. You can search the board for prior posts about metformin, or, if you wish, ask questions.



    ….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; 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.

    I asked my RT MD about Metformin + ADT when I was doing IMRT and he told me that it was being used for patients that have PCa that is outside the prostate.[Metastasized ]

    I asked my UR about Metformin being added to my ADT and he told me he had rather save it for use with ADT in the future if needed due to a re-occurence.

    If my next Blood sugar test comes back elevated I'm going to politely forcefully ask for Metformin. Never had Blood Sugar issue prior to Lupron.
    __________________
    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 07-09-2020, 02:06 PM   #8
    IADT3since2000
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    Re: Newbie just found this board

    Hi guitarhillbilly,

    You posted:

    Quote:
    Originally Posted by guitarhillbilly View Post
    I asked my RT MD about Metformin + ADT when I was doing IMRT and he told me that it was being used for patients that have PCa that is outside the prostate.[Metastasized ]

    I asked my UR about Metformin being added to my ADT and he told me he had rather save it for use with ADT in the future if needed due to a re-occurence.

    If my next Blood sugar test comes back elevated I'm going to politely forcefully ask for Metformin. Never had Blood Sugar issue prior to Lupron.
    I am not aware that metformin use is at all associated with the cancer being inside or outside of the prostate, or that it needs to be saved for a recurrence.

    What you encountered reads so like what I and many patients experience when we talk to doctors about matters on which they have not kept up: rather than offer to look into it, they act as if they are knowledgeable.

    Here's a tactic that works for me: I make a copy of abstracts of medical research studies that back up the points I am making, or copy complete papers, highlit to show key passages for our busy doctors, and give the copies to the doctor. It can help to make a comment like "Doesn't this look very promising for a case like mine? I've been fortunate that most of my doctors have been open-minded and not thinking they need to seem like an authority on everything.

    A key study on the impact of metformin (with exercise) on ADT side effects is at: https://pubmed.ncbi.nlm.nih.gov/21933330/ (abstract, with link to free access to complete paper.

    Jim

     
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    Old 07-11-2020, 10:33 AM   #9
    guitarhillbilly
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    Re: Newbie just found this board

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi guitarhillbilly,

    You posted:



    I am not aware that metformin use is at all associated with the cancer being inside or outside of the prostate, or that it needs to be saved for a recurrence.

    What you encountered reads so like what I and many patients experience when we talk to doctors about matters on which they have not kept up: rather than offer to look into it, they act as if they are knowledgeable.

    Here's a tactic that works for me: I make a copy of abstracts of medical research studies that back up the points I am making, or copy complete papers, highlit to show key passages for our busy doctors, and give the copies to the doctor. It can help to make a comment like "Doesn't this look very promising for a case like mine? I've been fortunate that most of my doctors have been open-minded and not thinking they need to seem like an authority on everything.

    A key study on the impact of metformin (with exercise) on ADT side effects is at: https://pubmed.ncbi.nlm.nih.gov/21933330/ (abstract, with link to free access to complete paper.

    Jim
    The problem is that most MD's will not deviate outside of standard known protocol and most things I read on ADT + Metformin is that its still in the clinical trials but has proven very effective.
    Until its standard protocol or I develop Type II as a result of the Lupron unfortunately I'll most likely travel this road without metformin.

    Then I read this:
    Published April 2019:
    https://bjui-journals.onlinelibrary.wiley.com/doi/10.1111/bju.14709

    "Conclusions

    No association was found between the use of metformin and time to metastasis detection, time to BF or OS in patients undergoing radiation therapy with or without ADT for PCa. In vitro , low therapeutic concentrations of metformin had no effect on HIF1α, and this observation could explain the conflicting evidence for the effectiveness of metformin in men undergoing EBRT for PCa. Higher, more toxic doses of metformin may be required to inhibit the mammalian target of rapamycin‐HIF1α pathway in this patient group."
    __________________
    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 07-14-2020, 03:03 AM   #10
    SubDenis
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    Re: Newbie just found this board

    I met a guy who was being treated by Dr. Snuffy Meyers (renowned PC doc) and he was put on Estorgel and this guy said it neutralized all the SEs. He had been on ADT before without Estrogel and had a tough time. May want to ask your Oncologist.
    __________________
    65YO healthy man, PSA 5/17 4.6, MPMRI, 5/17 lesion. 13 core biopsy 3 positive 3+3 All cores less than 30% 8/17 - second opinion Yale (3+4) in one core, < 5%, decipher test shows intermediate risks. HDR BT completed 2/6/18. 5/3/18 3 month Post HDR BT PSA 1.3, 6 mo PSA 1.2. 1-year PSA 1.0, testosterone 475, 18 month PSA 0.4 Testosterone 524, 30 month PSA 0.4.

     
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