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  • Dr Walsh's Guide to Surviving PCa

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    Old 09-04-2020, 05:14 AM   #16
    Prostatefree
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    Re: Dr Walsh's Guide to Surviving PCa

    I share Walsh's hesitancy to fully embrace radiation and ADT as the one size fits all answer. The improvements in radiation are recent and studies beyond 5 years are still rare.

    ADT is harsh. I understand the appreciation for it for those forced to use it. I consider the side effects of long term use to be incomparable to other treatment choices. That said, I will be the first to use it if it comes to that. Even if the boost is only 5% with radiation, I'll take it.

    Again, early detection gives you many more choices that are less toxic.

    The sharp edge of steel is a non toxic. Early detection and a cleanly removed prostate will cost you two sphincter muscles that help to control urine flow. Without them and with full recovery you will suffer minimum incontinence issues. Far less, than if you suffered through the BPH and slow growing cancer that doesn't kill you until you die of something else. I'm pleased to have my full urine stream back and my erections.

    I will acknowledge it is a higher risk treatment model. It worked for me. However, after much time on these boards I am much more accepting of radiation as a treatment and it would have been a much more challenging choice then if I knew what I know now. I was lucky with the choice of my surgeon and the extent of my cancer.

    My brother had much less cancer, but it was at the surface at the rectum. He had open surgery and radiation and ADT. He still has lingering issues with his bowels from the radiation, but considers them minor. He's watching his PSA more closely than I am. He stopped the ADT early. It was too unpleasant for him. The location and extent of the cancer has an impact on the radiation side effects just as it does in surgery.

    Check back in 10 years.

     
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    Old 09-04-2020, 01:00 PM   #17
    IADT3since2000
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    Re: Dr Walsh's Guide to Surviving PCa

    The Range of Absence/Mildness/Severity of Side Effects of Androgen Deprivation Therapy (ADT)

    Hi again JWPMP, Prostatefree and others. The following expresses a fairly common view regarding ADT:

    Quote:
    Originally Posted by Prostatefree View Post
    ...ADT is harsh. I understand the appreciation for it for those forced to use it. I consider the side effects of long term use to be incomparable to other treatment choices. ...
    Fortunately, the sources of this view have usually not experienced ADT themselves or are physicians who do not use ADT much or, my impression, do not monitor their patients much who are on it, or review their case records so that they can see patterns. Moreover, these doctors often, in my personal impression, do not brief their patients adequately on countermeasures to prevent or minimize side effects, or monitor them for typical side-effects. Some physicians, like Dr. Walsh at least in much of his career, typically used ADT when a patient already had developed symptoms from metastases, in other words at a late stage, and therefore side effects of ADT were commingled with side effects of late-stage, distant metastatic prostate cancer.

    Doctors, typically "medical oncologists," who do use a lot of longer-term ADT with their patients and have practices with many prostate cancer patients, often with a large proportion of challenging cases, usually, my impression, do extensive monitoring as well as overview of case and similar-case patterns. They see a much lower usual burden from ADT side effects, provided that the patient complies with recommended countermeasures to prevent or mitigate side effects.

    As you can see from my signature below, I am a long-term veteran of ADT, with a total of 87 months under my belt, including 31 months straight during my first round and the remainder during three other rounds of 19 or 18 months each. While I have zero enrolled medical education, I have paid attention to research, and I've been going to nearly monthly UsToo prostate cancer support/education group meetings for almost all of the past twenty years, often interacting with patients on ADT.

    My personal conclusion is that ADT for most of us will not feel "harsh." Probably 90% of us will lose our sex drive while we are on ADT, and that is a loss for both us and our wives, but, frankly and as amazing as it may sound, we also lose the ability to be bothered by that loss, except in kind of an academic sense. (From what I read on patient forums, that contrasts to the experience of impotence among surgery patients, who are often very frustrated.) It's kind of, for us ADT patients, like being like we were at, say, 10 years old, before puberty, though we will still love our mates. Without exercise and proper diet, and perhaps metformin, we will put on weight and possibly experience other metabolic syndrome symptoms. But countermeasures can prevent those developments. Hot flashes/sweats, if too bothersome, can be prevented. Decrease in muscle mass can be countered, but with more effort. Pain, including joint pain, can be alleviated. Decrease in bone mineral density can be managed and countered. Also, there is no incontinence associated with ADT.

    Fortunately, for that large proportion of us who are able to use ADT just one time or intermittently, most of us will recover from whatever side effects we have experienced, including sexual side effects, when our testosterone has recovered after we are able to cease using ADT. (My own testosterone recovered to over 1,000, quite high, after my first round. )

    I could go on, but that should be enough to give you the idea that ADT need not be and usually is not harsh." ADT is definitely no cakewalk. It takes extra effort and attention, but for most of us the burden is quite tolerable.

    I hope this helps.

    .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 09-04-2020, 02:12 PM   #18
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    Re: Dr Walsh's Guide to Surviving PCa

    Quote:
    Originally Posted by Prostatefree View Post
    Not sure where you got your view of Medicare, but combined with a good supplemental plan it will be the best and least expensive medical insurance you will every have. It pays all my costs. No questions asked. Premiums are less than $425/month. Deductible less than $300/year.

    Be careful of the Advantage plans. They are a lower cost option intended to help those with limited resources and they limit providers.

    I had them all; private; company group as an employee; company group as business owner; now Medicare with UHC supplemental plan F and Humana drug plan. The Medicare combination is by far the best, imo. The supplemental drug plans need some attention, but it's a small complaint.

    I am currently employed as I maneuver a soft landing to retirement for myself. I moved to Medicare as soon as I could opting out of my employer's plan because there was no comparison in cost. I still take advantage of the employer's FSA option.

    If the union is smart, they will kick you off their plan as soon as you are eligible for Medicare. Glad to hear they offer a supplemental plan, but since the requirements are fixed by regulation you will find the costs competitive and maybe cheaper on the market. Group plans tend to be more expensive.
    Thats is such a relief to hear!
    Been concerned even before the cancer.
    His union will definitely kick him off when he's eligible for Medicare.
    Sure hope UCSF is covered.
    Our current plan is Anthem Blue Blue Cross PPO
    It is $500/month total for both of us.
    No deductible.
    No referrals required for specialists
    We pay strictly 20% of contracted rate.
    $10,000 out of pocket max a year
    Not sure how everything will work when he's on Medicare and I'm not old enough yet.
    something I should research.
    thank you for the encouraging report on medicare

     
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    Old 09-04-2020, 02:22 PM   #19
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    Re: Dr Walsh's Guide to Surviving PCa

    Some of what Jim notes are a current hot button of mine. Providers do not counsel or track those of us on ADT, at least for short term. They appear to be either ignorant of or uncomfortable with the details they should be providing. Treatment is all a very mechanical, by the numbers process.

    I am scheduled for a teleconference with the folks at Salem Cancer Institute to cover this. I am short term (6) months so my observations may or may not apply to longer term treatment.

    The fact is that, with counseling and support, ADT should not be a major issue. Lupron specifically gives men menopausal symptoms that almost every woman alive goes through. So, men gonna wimp out?

    I will have to disagree a bit with Jim on one part:

    "Probably 90% of us will lose our sex drive while we are on ADT, and that is a loss for both us and our wives, but, frankly and as amazing as it may sound, we also lose the ability to be bothered by that loss, except in kind of an academic sense...It's kind of, for us ADT patients, like being like we were at, say, 10 years old, before puberty, though we will still love our mates."

    I think that what Jim describes is the danger. We do lose our sex drive and don't experiment. But I suspect many or most men may be able to experience full sexual function while on ADT if instructed and encouraged to do so. I also suspect many providers may be uncomfortable with this conversation.

    When I was faced with ADT I had read about penile rehab and the need for frequent erections to prevent atrophy of erectile tissue in surgical patients. I decided to have at least one erection a day to prevent atrophy. Other men on two other forums have had the same realization, one or two men found that the desire to please their spouse led them to becoming aroused and to intercourse.

    Without sexual interest, we need to take control. Sexual function becomes, like Jim says, academic. Some days I have to fight the lack of interest and JUST GET IT DONE. For me it requires either playfulness from my wife or erotic fantasy and physical stimulation. And it requires 100% concentration since there is no testosterone boost to put it on auto.

    All of us who have experienced continued sexual activity got there through self discovery, not through help from our providers. I will be talking to the folks at Salem Cancer Institute about looking into providing detailed information to ADT patients in the future.
    __________________
    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 09-04-2020, 02:31 PM   #20
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    Re: Dr Walsh's Guide to Surviving PCa

    [QUOTE=IADT3since2000;5505304]The Range of Absence/Mildness/Severity of Side Effects of Androgen Deprivation Therapy (ADT)

    Hi again JWPMP, Prostatefree and others. The following expresses a fairly common view regarding ADT:



    Fortunately, the sources of this view have usually not experienced ADT themselves or are physicians who do not use ADT much or, my impression, do not monitor their patients much who are on it, or review their case records so that they can see patterns. Moreover, these doctors often, in my personal impression, do not brief their patients adequately on countermeasures to prevent or minimize side effects, or monitor them for typical side-effects. Some physicians, like Dr. Walsh at least in much of his career, typically used ADT when a patient already had developed symptoms from metastases, in other words at a late stage, and therefore side effects of ADT were commingled with side effects of late-stage, distant metastatic prostate cancer.

    Doctors, typically "medical oncologists," who do use a lot of longer-term ADT with their patients and have practices with many prostate cancer patients, often with a large proportion of challenging cases, usually, my impression, do extensive monitoring as well as overview of case and similar-case patterns. They see a much lower usual burden from ADT side effects, provided that the patient complies with recommended countermeasures to prevent or mitigate side effects.

    As you can see from my signature below, I am a long-term veteran of ADT, with a total of 87 months under my belt, including 31 months straight during my first round and the remainder during three other rounds of 19 or 18 months each. While I have zero enrolled medical education, I have paid attention to research, and I've been going to nearly monthly UsToo prostate cancer support/education group meetings for almost all of the past twenty years, often interacting with patients on ADT.

    My personal conclusion is that ADT for most of us will not feel "harsh." Probably 90% of us will lose our sex drive while we are on ADT, and that is a loss for both us and our wives, but, frankly and as amazing as it may sound, we also lose the ability to be bothered by that loss, except in kind of an academic sense. (From what I read on patient forums, that contrasts to the experience of impotence among surgery patients, who are often very frustrated.) It's kind of, for us ADT patients, like being like we were at, say, 10 years old, before puberty, though we will still love our mates. Without exercise and proper diet, and perhaps metformin, we will put on weight and possibly experience other metabolic syndrome symptoms. But countermeasures can prevent those developments. Hot flashes/sweats, if too bothersome, can be prevented. Decrease in muscle mass can be countered, but with more effort. Pain, including joint pain, can be alleviated. Decrease in bone mineral density can be managed and countered. Also, there is no incontinence associated with ADT.

    Fortunately, for that large proportion of us who are able to use ADT just one time or intermittently, most of us will recover from whatever side effects we have experienced, including sexual side effects, when our testosterone has recovered after we are able to cease using ADT. (My own testosterone recovered to over 1,000, quite high, after my first round. )

    I could go on, but that should be enough to give you the idea that ADT need not be and usually is not harsh." ADT is definitely no cakewalk. It takes extra effort and attention, but for most of us the burden is quite tolerable.

    I hope this helps.

    .Jim
    END QUOTE

    Yes Jim, it helps tremendously.
    The cure seems worse than the ill at this point, and we have no idea what point we're at. So yes, any hope for getting through this is helpful.
    My husband (Jim) has already mentioned a couple of times about asking the doctor how long he could live if we do absolutely nothing. I told him not an option.
    He has asked so much of his body throughout his life, that I'm hopeful with as you say, "proper counter measures" he can get through this.
    Provided its not massively metastisized all over.
    my head aches from worrying.
    Thank you again for the perspective.
    Paula & Jim

     
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    Old 09-05-2020, 10:45 AM   #21
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    Re: Dr Walsh's Guide to Surviving PCa

    We know very little about our hormone systems, and yes my experience is anecdotal. Hormones are much more complicated and integrated into the management of our health than we give them credit for.

    A good friend has now been on it for several years. His personality has changed as well as his physical attributes. Nothing extreme, but obvious and certainly acceptable given the alternative. He monitors it constantly, had changed it several times including starting and stopping. It is more management than treatment or cure.

    Medicare with a full supplemental will be better than your PPO. Not sure about the cost since PPOs tend to be value oriented options.

     
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    Old 09-05-2020, 12:00 PM   #22
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    Re: Dr Walsh's Guide to Surviving PCa

    I don't know that ADT alone is ever a cure. Just putting things on hold. For short term with radiation it supposedly makes the cancer more vulnerable.

    Longer term can be more of a challenge, I understand. Short term side effects are fairly limited to hot flashes, over the top emotion, possible personality changes (due to the emotions?), less to no interest in sex, etc. Longer term brings in other issues that women commonly face including weight gain, bone density loss as well as maybe breast enlargement and increased sensitivity, more serious personality change and others.

    The emotions have been my personal challenge. I know that I had depression even before being diagnosed with cancer and was concerned that it might be driving some of the over the top emotions. If so, I decided to consult with a psychologist to clear out some old baggage and, hopefully, the depression. THAT was an interesting journey that went places I didn't expect and has, in fact, apparently helped. Still an unusual amount of emotions, but not so over the top. Thankfully, anger was never one of those emotions. Mostly sentimental.
    __________________
    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 09-05-2020, 12:42 PM   #23
    IADT3since2000
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    Re: Dr Walsh's Guide to Surviving PCa

    Hi again JWPMP (Paula) and Prostatefree. I'm replying to a recent post:

    Quote:
    Originally Posted by Prostatefree View Post
    We know very little about our hormone systems, and yes my experience is anecdotal.
    I would not be surprised if that statement about knowing little is true for surgeons. They are experts with the knife, but, like many specialists, it is clear to me that many do not know much beyond their own specialty, particularly about radiation, and, what is the topic here, drugs that are used for androgen deprivation therapy, aka hormonal therapy. (There are some exceptional surgeons who somehow are able to cover a lot of bases. Dr. Laurence Klotz, MD, comes right to mind. Dr. Judd Moul, MD, is another, and there are quite a few more.)

    However, drugs are the stock-in-trade for medical oncologists (who would typically be lousy at surgery). They tend to know a lot about our hormone systems, and this is a heavily researched area. To check for yourself, try a search of our National Institutes of Health free resource PubMed at www.pubmed.gov. I just searched for - prostate cancer AND androgen deprivation therapy - and got a list of 7,561 papers. For every year since 2012 more than 500 papers have been published. While much is still not known, a sophisticated understanding of the molecular and hormonal signaling pathways that affect prostate cancer has been developed, and physicians who are knowledgeable have been able to use this knowledge to benefit us patients.

    Quote:
    Originally Posted by Prostatefree View Post
    Hormones are much more complicated and integrated into the management of our health than we give them credit for.
    Yes, we laymen tend not to think very little about hormones and all that they do.

    Quote:
    Originally Posted by Prostatefree View Post
    A good friend has now been on it for several years. His personality has changed as well as his physical attributes. Nothing extreme, but obvious and certainly acceptable given the alternative. He monitors it constantly, had changed it several times including starting and stopping. It is more management than treatment or cure.
    Do you know whether he has diligently applied countermeasures for the side effects of ADT? Do you know if he is eligible for an attempt at curative treatment, as happened for me? If he has metastatic disease that cannot be eliminated, he may need to stay on hormonal treatment. These days, advanced imaging is freeing some of us from lifelong dependence on ADT, as it did me.

    .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 09-05-2020, 12:58 PM   #24
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    Re: Dr Walsh's Guide to Surviving PCa

    Continuation of Sexual Activity While on ADT

    Hi Guy,

    I'm envious, but I've had a modest amount of success along these lines too. It's more "sex work" than "sex drive", isn't it?

    Your comment is right on the money from what I've learned:

    Quote:
    Originally Posted by GuyBMeredith View Post
    ... Some of what Jim notes are a current hot button of mine. Providers do not counsel or track those of us on ADT, at least for short term. They appear to be either ignorant of or uncomfortable with the details they should be providing. Treatment is all a very mechanical, by the numbers process.

    I am scheduled for a teleconference with the folks at Salem Cancer Institute to cover this. I am short term (6) months so my observations may or may not apply to longer term treatment.

    The fact is that, with counseling and support, ADT should not be a major issue. Lupron specifically gives men menopausal symptoms that almost every woman alive goes through. So, men gonna wimp out?

    I will have to disagree a bit with Jim on one part:

    "Probably 90% of us will lose our sex drive while we are on ADT, and that is a loss for both us and our wives, but, frankly and as amazing as it may sound, we also lose the ability to be bothered by that loss, except in kind of an academic sense...It's kind of, for us ADT patients, like being like we were at, say, 10 years old, before puberty, though we will still love our mates."

    I think that what Jim describes is the danger. We do lose our sex drive and don't experiment. But I suspect many or most men may be able to experience full sexual function while on ADT if instructed and encouraged to do so. I also suspect many providers may be uncomfortable with this conversation.

    When I was faced with ADT I had read about penile rehab and the need for frequent erections to prevent atrophy of erectile tissue in surgical patients. I decided to have at least one erection a day to prevent atrophy. Other men on two other forums have had the same realization, one or two men found that the desire to please their spouse led them to becoming aroused and to intercourse.

    Without sexual interest, we need to take control. Sexual function becomes, like Jim says, academic. Some days I have to fight the lack of interest and JUST GET IT DONE. For me it requires either playfulness from my wife or erotic fantasy and physical stimulation. And it requires 100% concentration since there is no testosterone boost to put it on auto.

    All of us who have experienced continued sexual activity got there through self discovery, not through help from our providers. I will be talking to the folks at Salem Cancer Institute about looking into providing detailed information to ADT patients in the future.
    Early on I read a book by a woman who was intent on maintaining some kind of romantic life while her husband was on ADT. They were successful. On the other hand, both of them were championship level Nordic skiers, so I'm thinking they are not typical. Here's part of the blurb for the book: "She and her husband with a challenging case had great success (probably frequently needed a window defogger ), which could be discouraging to some readers (and embarrassing to kids and relatives - ), but they worked at it, and she has some good advice, points of view, and thoughts." Still, while not typical, they show what is possible. Here are the details: "Surviving Prostate Cancer Together: In Sickness and in Health:BY Gervais, Mary Carolyn Cook( Author ) on Dec-01-2004 Paperback Paperback December 24, 2004. I just found the listing on an ordering service, and it's priced at $903 - might be better to check for it in a library.

    Jim

     
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    Old 09-05-2020, 01:37 PM   #25
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    Re: Dr Walsh's Guide to Surviving PCa

    Quote:
    Originally Posted by Prostatefree View Post
    We know very little about our hormone systems, and yes my experience is anecdotal. Hormones are much more complicated and integrated into the management of our health than we give them credit for.

    A good friend has now been on it for several years. His personality has changed as well as his physical attributes. Nothing extreme, but obvious and certainly acceptable given the alternative. He monitors it constantly, had changed it several times including starting and stopping. It is more management than treatment or cure.

    Medicare with a full supplemental will be better than your PPO. Not sure about the cost since PPOs tend to be value oriented options.
    The Medicare news is terrific, glad to know that.

    The hormone treatment sounds bleak, this whole situation seems
    bleak. However, as you say, it beats the alternative.

    thank you

     
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    Old 09-06-2020, 08:59 AM   #26
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    Re: Dr Walsh's Guide to Surviving PCa

    A 75 yo neighbor was diagnosed Stage 4 with spread to the rectum. Treatment was surgery, radiation and 6 months ADT. There is some current science that debunking the primary tumor increases survival. In the example given, a year after treatment his PSA is 0.08 and rising slowly.

     
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    Old 09-07-2020, 06:33 AM   #27
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    Re: Dr Walsh's Guide to Surviving PCa

    Quote:
    Originally Posted by IADT3since2000 View Post
    The Range of Absence/Mildness/Severity of Side Effects of Androgen Deprivation Therapy (ADT)
    My personal conclusion is that ADT for most of us will not feel "harsh." Probably 90% of us will lose our sex drive while we are on ADT, and that is a loss for both us and our wives, but, frankly and as amazing as it may sound, we also lose the ability to be bothered by that loss, except in kind of an academic sense.[/SIZE]
    This makes my point.

    Most of us will lose our sex drive and not care.

    If that's not an example of physical and personality change I don't know what is. And there's more than just that change. I'm not arguing it's a good or bad thing. Just eyes wide open.

    Ignorance is bliss, until it's not.

    If I were to argue this point I'd say the loss of sex drive is the least of my concerns. My libido is already diminishing. I use it as an obvious counterpoint to the view it's not harsh in many ways.

     
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    Old 09-07-2020, 07:48 AM   #28
    guitarhillbilly
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    Posts: 235
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    Re: Dr Walsh's Guide to Surviving PCa

    Prostatefree has given good advice here.
    My granddaughter is a Social worker and she warned my Wife and I to AVOID Medicare ADVANTAGE PLANS like the plague.
    Medicare is excellent with a good supplemental plan.
    Pre-Authorization can be a pain no matter what Insurance you have.
    __________________
    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 09-07-2020, 08:37 AM   #29
    JWPMP
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    Location: Oakdale CA
    Posts: 264
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    Re: Dr Walsh's Guide to Surviving PCa

    Quote:
    Originally Posted by guitarhillbilly View Post
    Prostatefree has given good advice here.
    My granddaughter is a Social worker and she warned my Wife and I to AVOID Medicare ADVANTAGE PLANS like the plague.
    Medicare is excellent with a good supplemental plan.
    Pre-Authorization can be a pain no matter what Insurance you have.
    Really appreciate the direction from you all on the Medicare
    Know less than zero about it, but at least now I have a target when I start my research
    thank you

     
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    Old 09-07-2020, 08:58 AM   #30
    IADT3since2000
    Senior Veteran
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    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,875
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: Dr Walsh's Guide to Surviving PCa

    Hi Prostatefree. You replied to my post:

    Quote:
    Originally Posted by Prostatefree View Post
    This makes my point.

    Most of us will lose our sex drive and not care.
    ...
    If I were to argue this point I'd say the loss of sex drive is the least of my concerns. My libido is already diminishing. I use it as an obvious counterpoint to the view it's not harsh in many ways.
    Yes, in one sense, the impact on sex is "harsh"; in another, as in your sentence about not caring (for those on ADT), it is not. As you wrote, the important thing that affects our actions and thinking is to go into this with eyes wide open.

    ….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 PSA as of 9/4/2020). (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.

    Last edited by IADT3since2000; 09-07-2020 at 08:58 AM. Reason: Added signature right after posting.

     
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