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Re Steve Jordan, and update
  1. #1
    MikeHi Guest

    Default Re Steve Jordan, and update

    I tuned in again today to give an update, but first must add my deep
    regrets and feeling of loss at learning of Steve Jordan's passing,
    which I've just seen recorded. Like a number of other stalwarts in
    this group he was unstinting in finding time to help others. Steve was
    invariably among those answering queries I addressed to the list
    especially in my early days of learning how to beat the bastard. Thank
    you Steve. May he rest in peace.

    Before any update, I have to note, without meaning to be dramatic,
    some words from Steve Kramer (glad your own condition good, Steve)
    about Steve Jordan's situation which bears some resemblance to my own
    ....:

    '...went off ADT in March 2006 after a year of undetectable for year.
    But his PSA was back up to 0.98 in May 2008 and he went back on
    .....(treatments)....He was undetectable again in October 2008 and
    stopped (treatment). But, his PSA rose to 0.44 one month later and he
    went back on (treatment). I do not recall him reporting a PSA since
    July 2009, but during July 2011 he reported that his ADT was failing.'

    My recent treatment and PSA have roughly followed the same pattern.
    Brief history:
    I was diagnosed 2005 PSA 14.11 Gleason 9, went on to have guinea pig
    HIFU op 2006 (High-Intensity Focussed Ultrasound) which ablated my
    prostate, and then a second one on my seminal vesicle which left
    positive margins.

    These ops (which I understand have been much refined since) did pretty
    well by me, virtually nil side-effects (get occasional small leaks as
    of today for which I wear light protection - ladies' stuff), and PSA
    for some years hanging about around 4-6 until suddenly shooting up to
    above 33 November 2008 when I started on ADT - Zoladex. Within a month
    PSA fell to 0.091 then for 2009/10 was .005 or less.

    And then the parallel with Steve started, as follows: April 2010
    Zoladex ended but PSA continued at low levels until this year, 2011
    when it rose July 27 to 0.869 (February it had been .0001). I updated
    this figure to the guys here. And I learned this morning that a blood
    test on October 15 has shown my PSA has doubled in these last three
    months to 1.7.

    I received strong advice from guys I highly respect on this NG to do
    something about the July 27 rise. But my oncologist (UK) seemed
    unconcerned and I must confess I've been lazily (and maybe a little
    fearfully? I'm not sure) content to do nothing, while still feeling
    OK.

    I must say that this consequent doubling in three months is a very
    inconsiderate way for any medical condition to behave towards an aged
    gent who will be 84 next month. I am getting my own back in one way,
    having seen the film 'The Bucket List' I booked a trip to Hong Kong -
    and then on to Manila to visit and thank some of the families of the
    absolutely wonderful Filipino carers who helped look after my wife in
    the last couple of years of her life. I will make the most of the
    trip.

    I have told my oncologist's secretary when I'll be back in November
    and I will then learn no doubt what he may suggest. But the secretary
    said that the results had 'not been red flagged' which I assume is on
    the basis of the absolute figure rather than the rate of advance. When
    I read the detail of analyses of blood tests taken in the USA - when
    what's checked in the UK is just the PSA (without acceleration
    figuring very highly, it seems) I wonder how far we might lag behind.

    So when I come back - on the basis of previous advice from people
    I've learned to respect in this group, and before reading any
    responses to this post - I will make sure I see my oncologist.

    I have to say I would like to avoid any going back on ADT treatment
    and have noted today some discussions recently on the NG that the
    treatment is falling into disfavour. My oncologist has earlier
    mentioned however that if the ADT treatment had stopped working
    (having been suspended) he would resume it.

    I suppose it's relevant to say at this point that my history also
    includes scans suggesting tumors in my left hip (Greater Trochanter),
    left pelvic sidewall nodes, and lymph nodes, which I assume have been
    lying dormant frustrated at not having a chance to bite me. But as
    these scans were taken in 2008 I wonder why they should have lain
    quiescent for so long? These scans are not always conclusive.

    I would be most grateful for questions or suggestions for treatment I
    could put to my oncologist.

    My thanks.

    mikeHi (Yep IPF, it is me this time!)

  2. #2
    I.P. Freely Guest

    Default Re: Re Steve Jordan, and update

    MikeHi wrote:
    >
    > I would be most grateful for questions or suggestions for treatment I
    > could put to my oncologist.


    I can think of at least these reasons your onc's secretary hasn't red
    flagged your latest PSA:
    1. Your 1.7 all by itself diminishes the likelihood that SRT is still a
    curative option (I've forgotten whether you've had SRT).
    2. Any distant PC mets assure that SRT is not an option.
    3. That three-month PSADT is even more alarming than the 1.7, but it
    elevates the urgency of your bucket list more than it does the urgency
    of your next non-curative mainstream, active treatment option, which is
    ADT.
    4. If you elect to reject ADT until it *improves" your QOL -- a valid
    choice in many cases -- there's no hurry. Your mets vs your personal
    experience with ADT will determine that point.
    5. It's also conservative to await PSA confirmation before taking any
    drastic actions. Waiting until November is not going to hurt you since
    SRT is not a viable option.

    That's five reasons against knee-jerking before Christmas. I can think
    of no reasons in favor of it.

    --
    I.P.
    Oct 24, 2011 update:
    PSAs something like 2, 4, 6, 8 from 2000-2004.
    PCP woke up and suggested a biopsy at PSA = 8.8.
    (onc says that PCP may have signed my death warrant)
    Gleason 4+4=8 PC.
    Scan for PC mets negative.
    Consulted several PC specialists in quick succession.
    RRP in VA hospital Oct 2004.
    Post-op pathology: SVI, no nodes, no mets, negative margins. Oncologists
    said behind my back that I'd be back within three years.
    Prescribed ADT Just In Case. Rejected until I see a better incentive,
    including a greater therapeutic ratio and some indication I may have
    cancer.
    2005-2010: PSA bounced around randomly and meaninglessly between 0.053
    and <0.002.
    In the 7th year post-op, 2011, yet another rising trend topped 0.100.
    PC again ... definitely.
    Next PSA left no doubt. Full month of heavy research, long uro onc
    consult, SRT + adjuvant ADT recommended.
    Research leaves significant doubt about SRT, virtually none about
    adjuvant ADT.
    Fortunate to have excellent rad onc and state of the art facility 10
    minutes away; awaiting outcome of initial SRT "simulation" ... the
    three-decimal-point analysis of SRT's expected therapeutic ratio for
    *my* body, *my* cancer, and *my* priorities.

  3. #3
    ron Guest

    Default Re: Re Steve Jordan, and update

    Mike wrote...snip
    "I have to say I would like to avoid any going back on ADT treatment"

    Mike...Here's a link to an earlier discussion on the use of transdermal estrogen in place of ADT. There are still choices that can be made. Men who cannot tolerate LHRH analogues, or men who become hormone resistamt often try estrogen therapy. Unlike LHRH analogues estrogen improves bone density and
    mental acuity while effectively surpressing T levels. It has a long history of usage, has a different side effect profile (breast enlargement), and it is cheap (hence the lack of publicity). Transdermal application bypassesthe cardiac problems that arose back in the 40's. Much work has been donewith estrogens of late. Here is a link to an older post of mine in this ng that summarizes some of the work.

    http://tinyurl.com/ck65yf



    You may find it of interest...Good health and best wishes...ron


  4. #4
    Steve Kramer Guest

    Default Re: Re Steve Jordan, and update

    I found it Mike!

    I am sorry to year of you most recent and continued rise in PSA. It was not
    unexpected, but still distressing.

    I think you are wise in continuing your plans for your trip (and sorry that
    Rosemarie cannot be with you). Most "experts" agree that the third rise is
    the key and you cannot count any below 0.10. So, if your PSA in 3 months is
    3.4, then it is time to get back on ADT. You can play that game for years
    if it is as effective as it was for you in 2008.

    I experience no hot flashes anymore. After awhile, they just went away. I
    constantly battle fatigue with exercise (walking) and occasionally extra
    sleep. I live with no hair on my body and extra hair on my head (good
    trade) and slightly enlarged breasts. My last dexascan was so good, my doc
    put me on a 1-year Fosamax holiday.

    In short, forget about it for three months, have a good time, and when you
    get back, take your medicine and keep living.



    PSA OCT 2000 @ 46
    Biopsy NOV 2000 3+4=7, T2c
    RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
    PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
    EBRT MAY - JULY 2002 @ 47
    PSA .34 .22 .15 .21 .32 PSAD 0.56 years
    Lupron started JULY 2003 @ 48
    PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
    Casodex added JUL 2006 @ 51
    PSA <0.1 since Next draw AUG 2012 @ 57
    Illegitimati non carborundum




    "MikeHi" wrote in message
    news:[email protected]..

    I tuned in again today to give an update, but first must add my deep
    regrets and feeling of loss at learning of Steve Jordan's passing,
    which I've just seen recorded. Like a number of other stalwarts in
    this group he was unstinting in finding time to help others. Steve was
    invariably among those answering queries I addressed to the list
    especially in my early days of learning how to beat the bastard. Thank
    you Steve. May he rest in peace.

    Before any update, I have to note, without meaning to be dramatic,
    some words from Steve Kramer (glad your own condition good, Steve)
    about Steve Jordan's situation which bears some resemblance to my own
    ....:

    '...went off ADT in March 2006 after a year of undetectable for year.
    But his PSA was back up to 0.98 in May 2008 and he went back on
    .....(treatments)....He was undetectable again in October 2008 and
    stopped (treatment). But, his PSA rose to 0.44 one month later and he
    went back on (treatment). I do not recall him reporting a PSA since
    July 2009, but during July 2011 he reported that his ADT was failing.'

    My recent treatment and PSA have roughly followed the same pattern.
    Brief history:
    I was diagnosed 2005 PSA 14.11 Gleason 9, went on to have guinea pig
    HIFU op 2006 (High-Intensity Focussed Ultrasound) which ablated my
    prostate, and then a second one on my seminal vesicle which left
    positive margins.

    These ops (which I understand have been much refined since) did pretty
    well by me, virtually nil side-effects (get occasional small leaks as
    of today for which I wear light protection - ladies' stuff), and PSA
    for some years hanging about around 4-6 until suddenly shooting up to
    above 33 November 2008 when I started on ADT - Zoladex. Within a month
    PSA fell to 0.091 then for 2009/10 was .005 or less.

    And then the parallel with Steve started, as follows: April 2010
    Zoladex ended but PSA continued at low levels until this year, 2011
    when it rose July 27 to 0.869 (February it had been .0001). I updated
    this figure to the guys here. And I learned this morning that a blood
    test on October 15 has shown my PSA has doubled in these last three
    months to 1.7.

    I received strong advice from guys I highly respect on this NG to do
    something about the July 27 rise. But my oncologist (UK) seemed
    unconcerned and I must confess I've been lazily (and maybe a little
    fearfully? I'm not sure) content to do nothing, while still feeling
    OK.

    I must say that this consequent doubling in three months is a very
    inconsiderate way for any medical condition to behave towards an aged
    gent who will be 84 next month. I am getting my own back in one way,
    having seen the film 'The Bucket List' I booked a trip to Hong Kong -
    and then on to Manila to visit and thank some of the families of the
    absolutely wonderful Filipino carers who helped look after my wife in
    the last couple of years of her life. I will make the most of the
    trip.

    I have told my oncologist's secretary when I'll be back in November
    and I will then learn no doubt what he may suggest. But the secretary
    said that the results had 'not been red flagged' which I assume is on
    the basis of the absolute figure rather than the rate of advance. When
    I read the detail of analyses of blood tests taken in the USA - when
    what's checked in the UK is just the PSA (without acceleration
    figuring very highly, it seems) I wonder how far we might lag behind.

    So when I come back - on the basis of previous advice from people
    I've learned to respect in this group, and before reading any
    responses to this post - I will make sure I see my oncologist.

    I have to say I would like to avoid any going back on ADT treatment
    and have noted today some discussions recently on the NG that the
    treatment is falling into disfavour. My oncologist has earlier
    mentioned however that if the ADT treatment had stopped working
    (having been suspended) he would resume it.

    I suppose it's relevant to say at this point that my history also
    includes scans suggesting tumors in my left hip (Greater Trochanter),
    left pelvic sidewall nodes, and lymph nodes, which I assume have been
    lying dormant frustrated at not having a chance to bite me. But as
    these scans were taken in 2008 I wonder why they should have lain
    quiescent for so long? These scans are not always conclusive.

    I would be most grateful for questions or suggestions for treatment I
    could put to my oncologist.

    My thanks.

    mikeHi (Yep IPF, it is me this time!)


  5. #5
    MikeHi Guest

    Default Re: Re Steve Jordan, and update

    Thank you so much, IPF, Ron, and Steve. Have noted all you say. Extra
    hair on my head looks an attractive prospect for me too, Steve! And
    extremely glad to read your posts with the good news that you're
    still wiinning.


    My very best wishes to all on the NG

    mikeHi


    >I am sorry to year of you most recent and continued rise in PSA. It was not
    >unexpected, but still distressing.
    >
    >I think you are wise in continuing your plans for your trip (and sorry that
    >Rosemarie cannot be with you). Most "experts" agree that the third rise is
    >the key and you cannot count any below 0.10. So, if your PSA in 3 months is
    >3.4, then it is time to get back on ADT. You can play that game for years
    >if it is as effective as it was for you in 2008.
    >
    >I experience no hot flashes anymore. After awhile, they just went away. I
    >constantly battle fatigue with exercise (walking) and occasionally extra
    >sleep. I live with no hair on my body and extra hair on my head (good
    >trade) and slightly enlarged breasts. My last dexascan was so good, my doc
    >put me on a 1-year Fosamax holiday.
    >
    >In short, forget about it for three months, have a good time, and when you
    >get back, take your medicine and keep living.
    >
    >
    >
    >PSA OCT 2000 @ 46
    >Biopsy NOV 2000 3+4=7, T2c
    >RRP DEC 2000 3+4=7), T3cN0M0, SVI, Neg margins
    >PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
    >EBRT MAY - JULY 2002 @ 47
    >PSA .34 .22 .15 .21 .32 PSAD 0.56 years
    >Lupron started JULY 2003 @ 48
    >PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.40 years
    >Casodex added JUL 2006 @ 51
    >PSA <0.1 since Next draw AUG 2012 @ 57
    >Illegitimati non carborundum
    >
    >
    >
    >
    >"MikeHi" wrote in message
    >news:[email protected]. .
    >
    >I tuned in again today to give an update, but first must add my deep
    >regrets and feeling of loss at learning of Steve Jordan's passing,
    >which I've just seen recorded. Like a number of other stalwarts in
    >this group he was unstinting in finding time to help others. Steve was
    >invariably among those answering queries I addressed to the list
    >especially in my early days of learning how to beat the bastard. Thank
    >you Steve. May he rest in peace.
    >
    >Before any update, I have to note, without meaning to be dramatic,
    >some words from Steve Kramer (glad your own condition good, Steve)
    >about Steve Jordan's situation which bears some resemblance to my own
    >...:
    >
    >'...went off ADT in March 2006 after a year of undetectable for year.
    >But his PSA was back up to 0.98 in May 2008 and he went back on
    >....(treatments)....He was undetectable again in October 2008 and
    >stopped (treatment). But, his PSA rose to 0.44 one month later and he
    >went back on (treatment). I do not recall him reporting a PSA since
    >July 2009, but during July 2011 he reported that his ADT was failing.'
    >
    >My recent treatment and PSA have roughly followed the same pattern.
    >Brief history:
    >I was diagnosed 2005 PSA 14.11 Gleason 9, went on to have guinea pig
    >HIFU op 2006 (High-Intensity Focussed Ultrasound) which ablated my
    >prostate, and then a second one on my seminal vesicle which left
    >positive margins.
    >
    >These ops (which I understand have been much refined since) did pretty
    >well by me, virtually nil side-effects (get occasional small leaks as
    >of today for which I wear light protection - ladies' stuff), and PSA
    >for some years hanging about around 4-6 until suddenly shooting up to
    >above 33 November 2008 when I started on ADT - Zoladex. Within a month
    >PSA fell to 0.091 then for 2009/10 was .005 or less.
    >
    >And then the parallel with Steve started, as follows: April 2010
    >Zoladex ended but PSA continued at low levels until this year, 2011
    >when it rose July 27 to 0.869 (February it had been .0001). I updated
    >this figure to the guys here. And I learned this morning that a blood
    >test on October 15 has shown my PSA has doubled in these last three
    >months to 1.7.
    >
    >I received strong advice from guys I highly respect on this NG to do
    >something about the July 27 rise. But my oncologist (UK) seemed
    >unconcerned and I must confess I've been lazily (and maybe a little
    >fearfully? I'm not sure) content to do nothing, while still feeling
    >OK.
    >
    >I must say that this consequent doubling in three months is a very
    >inconsiderate way for any medical condition to behave towards an aged
    >gent who will be 84 next month. I am getting my own back in one way,
    >having seen the film 'The Bucket List' I booked a trip to Hong Kong -
    >and then on to Manila to visit and thank some of the families of the
    >absolutely wonderful Filipino carers who helped look after my wife in
    >the last couple of years of her life. I will make the most of the
    >trip.
    >
    >I have told my oncologist's secretary when I'll be back in November
    >and I will then learn no doubt what he may suggest. But the secretary
    >said that the results had 'not been red flagged' which I assume is on
    >the basis of the absolute figure rather than the rate of advance. When
    >I read the detail of analyses of blood tests taken in the USA - when
    >what's checked in the UK is just the PSA (without acceleration
    >figuring very highly, it seems) I wonder how far we might lag behind.
    >
    >So when I come back - on the basis of previous advice from people
    >I've learned to respect in this group, and before reading any
    >responses to this post - I will make sure I see my oncologist.
    >
    >I have to say I would like to avoid any going back on ADT treatment
    >and have noted today some discussions recently on the NG that the
    >treatment is falling into disfavour. My oncologist has earlier
    >mentioned however that if the ADT treatment had stopped working
    >(having been suspended) he would resume it.
    >
    >I suppose it's relevant to say at this point that my history also
    >includes scans suggesting tumors in my left hip (Greater Trochanter),
    >left pelvic sidewall nodes, and lymph nodes, which I assume have been
    >lying dormant frustrated at not having a chance to bite me. But as
    >these scans were taken in 2008 I wonder why they should have lain
    >quiescent for so long? These scans are not always conclusive.
    >
    >I would be most grateful for questions or suggestions for treatment I
    >could put to my oncologist.
    >
    >My thanks.
    >
    >mikeHi (Yep IPF, it is me this time!)


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