Annual Check-In

[Steve Kramer]

Back again to update this wonderful group who was there for me so many years ago.

On December 15, 2000, at 46, I underwent open surgery to remove my prostate. It had killed my great-grandfather, my grandfather, and my father and it was one of the more aggressive my surgeon (rated No. 1 in Cincinnati at the time) had seen, though he graded it as T1c, 3+4=7, with a 16 PSA. After a biopsy, he said I had a 66.6667% chance of catching it in the prostate with surgery. We did not.

During May through July 3, 2002, I underwent 35 radiation treatments. My radiation oncologist rated my chances at 50/50 of living 10 years if the radiation caught it in the prostate bed. It did not.

I think it was December 2002 that I began Lupron. The gold standard at that time was Lupron, expected to work up to 2 years; add Casodex, expected to work up to 2 years; add Zolodex, expected to work up to 2 years; chemotherapy; death.

Lupron worked for me for 3 years. We added Casodex. So far, it’s lasted 12 years. My PSA has been a straight line at 0.10 for three years after being <0.10 for 9 years.

My secret? I dunno. But, I think it involves the following:

1. I walk 95 to 100 miles a month on average (now proven to help with PCa and BCa).

2. I eat spicy foods when available (about 150,000 Scoville units – studies inconclusive).

3. I’ve had people from seven denominations praying for me (faith).

I am retired, celebrating my 43rd Anniversary today, and enjoying my three children, their spouses, and thirteen grandchildren. My cancer is incurable, but so far, I’m kicking it’s ass.

[GB]

On 13/12/2018 16:26, Steve Kramer wrote:

> 3. I’ve had people from seven denominations praying for me (faith).

Hi, Steve. I'm an atheist. Would you like me to pray for you, too? I'm
quite happy to do so, paradoxical as it may seem. Of course, I won't
believe it will help, but as long as you think it might I'm happy to
oblige. :)

[jloomis]

Hello Steve,
Good for you.
Keep it up, literally.....Most prostate cancer patients understand.
Anyway, I am in the doldrums.
I had the surgery in 1999
I was good for 18 years.
Now 2 years ago, my PSA went up ever so slightly.
Well, the Dr.s at Stanford said do radiation.....
I did it.
My PSA is still on the slight rise over the past 2 years from.3 to .9
It was .3 for many many years.
I do not know what to do or think other than get my PSA test, and see what
is in store for me also.
I run 3 times a week, I do Zumba. I work as a contractor on many a jobs.
So, what can I say.
I do my best.
Best wishes to you.
Yes, I have been in this group for that long....1999
John

"Steve Kramer" wrote in message
news:b38d20d1-8a07-4240...@googlegroups.com...

[Alan Meyer]

Hi Steve,

It's good to hear from you and to hear that you're still holding down
the cancer. I love to hear success stories and I speak of them (without
giving names) on other prostate cancer groups in order to encourage people.

This newsgroup is pretty inactive and I only check into to it
occasionally. I've been using one called "Advanced Prostate Cancer" at
http://healthunlocked.com. They have 6,000+ members and there are
bunches of postings every day.

My own situation is still good. I had a slight rise in PSA from .08 to
.11, but this has happened to me before and hopefully just indicates a
little prostatitis - still a possibility after radiation. I'll keep
watching it.

If hopefulness and good wishes are of any help, you have mine too.

Happy anniversary. I had my 50th this year and I'm still very much in love.

Regards,

Alan

[Alan Meyer]

Hello John,

Have the docs at Stanford or elsewhere made any suggestions for
treatment? Are you on ADT now?

There are some relatively light ADT treatments that have minimal side
effects but may work for a guy like you with minimal cancer. I'm
thinking of dutasteride and low dose bicalutamide (Casodex). I saw a
posting from one guy on healthunlocked.com who said he has been on 50 mg
of bicalutamide for the last six years with complete control of his PSA.
I think he said he takes the pills only two days out of every five. I
believe that a standard monotherapy dose is 150 mg/day. 50 has lower
side effects.

In addition to your exercise you might want to look into diet and
supplements. There's a guy on the healthunlocked.com Advanced Prostate
Cancer forum named Patrick O'Shea ("pjoshea13") who, I think, was a
professional pharmacology researcher. He is the most knowledgeable guy
I've ever seen on supplements for PCa. You might join the group and
search for his postings - or try a Google search for ( pjoshea13 foods
supplements )

Best of luck.

Alan

On 12/13/18 9:41 PM, jloomis wrote:
> Hello Steve,
> Good for you.
> Keep it up, literally.....Most prostate cancer patients understand.
> Anyway, I am in the doldrums.
> I had the surgery in 1999
> I was good for 18 years.
> Now 2 years ago, my PSA went up ever so slightly.
> Well, the Dr.s at Stanford said do radiation.....
> I did it.
> My PSA is still on the slight rise over the past 2 years from.3 to .9
> It was .3 for many many years.
> I do not know what to do or think other than get my PSA test, and see
> what is in store for me also.
> I run 3 times a week, I do Zumba. I work as a contractor on many a jobs.
> So, what can I say.
> I do my best.
> Best wishes to you.
> Yes, I have been in this group for that long....1999
> John
>

...

[jloomis]

Thank You Alan for a response.
I have not received any therapy as of yet other than Radiation 2 years ago.
My next test is this Jan.
I will see what comes out of that.
Hopefully, I do not want anything that is destructive to my general well
being, and the ADT treatments you mention,
are those that may be advised.
I will see.
Thank You again.
It is just so hard on me after 20 years or 19 of being free from this, and
then to have it come back at me mall rises in PSA.
John

"Alan Meyer" wrote in message news:pv8ska$o7t$1...@dont-email.me...

[Geo]

Hello All,
I thought I would add my Annual Check-in status and also comment on the
Mono-bicalutamide (casadex) treatment I'm on.

I am alternating 12 months on 25 mg bicalutamide then 12 months off.

History:
1. 2007 had RP which resulted in undetectable PSA until 2014.
PSA 4.2 before RP, Gleason 7=4/3
PSA <0.1 for 7 years Post RP

2. 2014 wait and see 1 year to confirm PC had indeed returned.

3. 2015 had 8 weeks SRT radiation which did not seem to fix the problem.
PSA 0.1 3 months post SRT
PSA 0.12 6 months post SRT
PSA 0.31 12 months post SRT
PSA 0.66 15 months post SRT

4. 2016 started 25mg (1/2 50mg) bicalutamide daily
PSA <0.05 at 3 months and 6 month;
PSA <0.01 at 12 months on bicalutamide

5. Paused taking bicalutamide for 1 year
PSA 0.07 at 6 months after stopping
PSA 0.52 at 12months

6. 2018 restarted 25mg bicalutamide again.

I have had no side effects from this regime. So far so good. My
understanding is with this low a PSA the PC is too small to locate.
Alternating the on/off I hope to prolong the status of being able knock
the PSA down and keep it contained where ever it resides now.

Merry Christmas and Happy New Year
Geo

[Alex]

Steve,

Great to check in and see your message and good news. You have been my guide
through the wilderness of PCa since I was diagnosed 13 years ago, at age 61, and
an inspiration to all of us.

Illegitimati non carborundum!

Alex


In article <b38d20d1-8a07-4240...@googlegroups.com>, Steve Kramer
says...
>
>Back again to update this wonderful group who was there for me so many year=
>s ago.
>
>On December 15, 2000, at 46, I underwent open surgery to remove my prostate=
>. It had killed my great-grandfather, my grandfather, and my father and it=
> was one of the more aggressive my surgeon (rated No. 1 in Cincinnati at th=
>e time) had seen, though he graded it as T1c, 3+4=3D7, with a 16 PSA. Afte=
>r a biopsy, he said I had a 66.6667% chance of catching it in the prostate =
>with surgery. We did not. =20
>
>During May through July 3, 2002, I underwent 35 radiation treatments. My r=
>adiation oncologist rated my chances at 50/50 of living 10 years if the rad=

>iation caught it in the prostate bed. It did not.
>

>I think it was December 2002 that I began Lupron. The gold standard at tha=
>t time was Lupron, expected to work up to 2 years; add Casodex, expected to=
> work up to 2 years; add Zolodex, expected to work up to 2 years; chemother=
>apy; death. =20
>
>Lupron worked for me for 3 years. We added Casodex. So far, it=E2=80=99s =
>lasted 12 years. My PSA has been a straight line at 0.10 for three years a=
>fter being <0.10 for 9 years. =20

>
>My secret? I dunno. But, I think it involves the following:
>

>1. I walk 95 to 100 miles a month on average (now proven to help with PCa a=
>nd BCa).
>
>2. I eat spicy foods when available (about 150,000 Scoville units =E2=80=93=
> studies inconclusive).
>
>3. I=E2=80=99ve had people from seven denominations praying for me (faith).
>
>I am retired, celebrating my 43rd Anniversary today, and enjoying my three =
>children, their spouses, and thirteen grandchildren. My cancer is incurabl=
>e, but so far, I=E2=80=99m kicking it=E2=80=99s ass.

[co...@barnet.com]

Hi Steve good to hear your still kicking

[prostwell]

It's great to hear from you again, Steve.

As another PSA-16 guy 10 years ago, your posts (and other folks on this very thread!) helped me learn and make treatment choices back then.

Now my post-RRP PSA has started creeping up again (to .07 with a 15mo DT) so it's time for me to catch up on what and when to maybe do something again,
it seems.

Hearing what others have done and what is working for them is really helpful for all of us, I think. e.g. Casodex seems to helping several folks.

Anyway, keep on keepin' on, and I hope your PSA continues to stay steady for your next year's "Annual Check-in" here.

[curtis]

===> hi steve.. that's great news and even greater when we met year after year after the RP.

it will be 16 years shortly for me and my latest psa was 0.008

time does fly. it will be 5 years since betty passed on. but I have a woman in my life who is a dream. she has weighted on me over the past two years and through my 5 eye surgeries as well as getting both knee joints replaced. soon, i'll be the 6 million dollar man at this rate.

I can't find your email since the laptop died.

i'm so happy for you and best wishes for the future. maybe, we can all have a 25th reunion or something like that. we are definitely warriors.

~ curtis

[I.P. Freely]

I've been on Dutasteride (and Finasteride) for a couple of years, as has
been prescribed for the rest of my life. The most recent study I can
find on Finasteride finds that it may help prevent PC, but that an
18-year followup showed no benefit for patients already diagnosed. Thus
I quit it, and did the same with my very similar med (both are 5ar
inhibitors) Dutasteride. When my fatigue increased last year, I began
studying my long list of prescribed meds and supplements ever more
closely in the interest of reversing my primary oncologist's mantra of
"If it might help, take it". I'm now shifting towards "Prove that it
helps enough to warrant its side effects."

My first action with that in mind -- dumping Thalidomide -- reversed my
extreme fatigue (and my neuropathy threat) immensely. Metformin is my
next such subject of scrutiny. I should add that I adamantly rejected
several supps (including statins, a very expensive prescription fish
oil, antinausea, diphenhydramine, PPI, Celebrex, and more) before even
starting them.

I get so fed up with the vast majority of physicians who insist that 1)
longevity, at any cost, is the only thing that matters and 2) only drugs
(or surgery) will cure a malady. My chiropractor and my kinesiologist
have done more for most of my symptoms, weaknesses, pains, and mobility
issues in minutes than the last few dozen MDs have in decades, and with
no side effects beyond a quick yelp of pain.

I.P.

[Phillip Helbig (undress to reply)]

In article <qivhpt$sfe$1...@dont-email.me>, "I.P. Freely"

<fugedd...@noway.nohow> writes:

> I've been on Dutasteride (and Finasteride) for a couple of years, as has
> been prescribed for the rest of my life. The most recent study I can
> find on Finasteride finds that it may help prevent PC,

That would be news to me. My understanding is that while it can't
prevent it, it might slow it down.

> My chiropractor and my kinesiologist
> have done more for most of my symptoms, weaknesses, pains, and mobility
> issues in minutes than the last few dozen MDs have in decades, and with
> no side effects beyond a quick yelp of pain.

But if you let them treat PC, you will die.

[I.P. Freely]

On 8/13/19 9:46 PM, Phillip Helbig (undress to reply) wrote:
> In article <qivhpt$sfe$1...@dont-email.me>, "I.P. Freely"
> <fugedd...@noway.nohow> writes:
>
>> I've been on Dutasteride (and Finasteride) for a couple of years, as has
>> been prescribed for the rest of my life. The most recent study I can
>> find on Finasteride finds that it may help prevent PC,
>
> That would be news to me. My understanding is that while it can't
> prevent it, it might slow it down.

If I have time to find and cite the references, I will do so.

>
>> My chiropractor and my kinesiologist
>> have done more for most of my symptoms, weaknesses, pains, and mobility
>> issues in minutes than the last few dozen MDs have in decades, and with
>> no side effects beyond a quick yelp of pain.
>
> But if you let them treat PC, you will die.

Of course. That's why they're treating physically obvservable maladies,
not the cancer. After all, I have yet to experience any cancer symptoms.
It existed only on scans, one lab parameter (PSA), and the long-gone
prostate.

OTOH, every cancer center I consulted, from two national cancer centers
to my extensive regional hospital oncology department, prescribed the
same death sentence: "Take ADT until it kills you. That takes about 2.5
years." That was nearly three years ago, and I'm still a vigorous athlete.

I.P.

[Phillip Helbig (undress to reply)]

In article <qj2enr$b9s$1...@dont-email.me>, "I.P. Freely"

<fugedd...@noway.nohow> writes:

> On 8/13/19 9:46 PM, Phillip Helbig (undress to reply) wrote:
> > In article <qivhpt$sfe$1...@dont-email.me>, "I.P. Freely"
> > <fugedd...@noway.nohow> writes:
> >
> >> I've been on Dutasteride (and Finasteride) for a couple of years, as has
> >> been prescribed for the rest of my life. The most recent study I can
> >> find on Finasteride finds that it may help prevent PC,
> >
> > That would be news to me. My understanding is that while it can't
> > prevent it, it might slow it down.
>
> If I have time to find and cite the references, I will do so.

Put it this way, if it could PREVENT prostate cancer, then surely we
would have heard of it! Because my PC was slow-growing at the
beginning, I had several years to read up on things. As for "help
prevent", perhaps in that it decreases prostate activity in general (and
hence decreases the PSA value, which does NOT mean that it decreases the
cancer), but with many side effects (cutting off one's finger will also
prevent skin cancer there). There are some other things, certain types
of food and so on, which might reduce the risk of PC with no ill effects
(pomegranate juice, for example).

> After all, I have yet to experience any cancer symptoms.
> It existed only on scans, one lab parameter (PSA), and the long-gone
> prostate.

Same here.

[I.P. Freely]

On 8/14/19 7:06 PM, I.P. Freely wrote:
> On 8/13/19 9:46 PM, Phillip Helbig (undress to reply) wrote:
>> In article <qivhpt$sfe$1...@dont-email.me>, "I.P. Freely"
>> <fugedd...@noway.nohow> writes:
>>
>>> I've been on Dutasteride (and Finasteride) for a couple of years, as has
>>> been prescribed for the rest of my life. The most recent study I can
>>> find on Finasteride finds that it may help prevent PC,
>>
>> That would be news to me.  My understanding is that while it can't
>> prevent it, it might slow it down.
>
> If I have time to find and cite the references, I will do so.

Googling <finasteride prostate cancer NEJM 18-year followup> led to many
articles discussing the use of finasteride w/PC. The universal
conclusion of many oncologsts from almost 300,000 manyears of followup
averaging 18.4 years in the Prostate Cancer Prevention Trial showed no
advantage in overall or PC-specific mortality once PC is diagnosed.
Finasteride (and Dutasteride) work by shrinking the prostate, which
helps diagnose but not treat existing PC. Among the many SEs of these
5-aR inhibitors is their artificial decrease in PSA, which may interfere
with accurate assessment of PC's progress and/or treatment.

I've been impotent since my 2004 RRP, so Finasteride/Dutasteride's death
sentence for my libido was a blessing in disguise. Men with PC but who
are still sexually active will not like 5-aR inhibitors' effects and
should closely evaluate its benefits - if any -- vs its downsides.

I.P.

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[Joe Price]

On a whim, I looked up this newsgroup. To be honest, I thought newsgroups no longer existed.
I was pleased to see your post. I was a regular here years ago but drifted off to live my like.
My story:
Diagnosis 2001 age 50
LRP 2001 - October, Lousy pathology (both SVs +, + margin)
Post Op PSA 0.06
Gradual rise until May 2005 (0.34)
Salvage conformable beam radiation - 38 treatments
No benefit PSA rose to 1.60 by March 2007
Begin intermittent HDT
PSA undetectable
Since then I have been on a total of 5 cycles of a year on and then off until PSA > 1.0 or so (usually about 15 months after the effects of my last eligard injection start to wear off) then resume HDT.
Presently 18+ years post prostatectomy and PSA = undetectable.

I am 69 now and travelled 142,634 km last year, the equivalent of 3.6 times around the world.

I am no fan of the side effects of HDT but am the poster boy for this therapy. It has worked wonderfully for me.

I wish you all well!

Joe

[jloomis]

Hello IP
I am scheduled for a fluciclovine scan at Stanford.
they thought I being a good candidate.
So far after 3 years of radiation,my PSA has been fluctuating
from .5 .9 .7 up to 1.5....and then back to 1.23

I was just at Stanford yesterday, and they do the scan, mark the area or
areas of possible
cancer and treat those areas.

So, here we go again.
John

"I.P. Freely" wrote in message news:qj2enr$b9s$1...@dont-email.me...

[I.P. Freely]

Yeah, many of us are still monitoring this newsgroup, largely because it
was once the best, most active, most focused PC forum available. Those
accolades shifted to another group (Yahoo? I forget) I tried for a
while. It was very impressive until its moderator imposed two firmly
enforced untenable rules:
1. He could wax politics all he wanted and we could neither object nor
respond in kind, even if our points were highly relevant to our medical
care.
2. We had to sign a pledge not to respond, no matter how politely, to
any personal attacks even if they poisoned the well against our
well-supported, invited facts and/or opinions on cancer. If we dared
disagree, even politely, with anyone else's obscene commentary about our
ancestry or the science of cancer, we had to resign from the forum.

That was an EASY choice for me.

Maybe those policies explain why I can no longer even find that forum (I
forget its name) when searching for the best PC forums on the internet.
I'd love to find and get involved with an excellent PC forum, but I
simply don't have the time anymore. Fighting Stage IV PC and all the
drugs, pharmacies, side effects, insurance companies, institutions,
oncologists, and ever-changing oncology that go with it leave me vastly
insufficient time to sleep and eat peacefully. Even just trying to keep
up with the medical science most relevant to our own case is
overwhelming, and our oncologists don't have the time to do it justice.

Yes, my fight consumes all of my time, but it has distinctly and
definitely extended my very life and its quality on numerous instances.
My own literature research has literally saved my life and/or quality
thereof on several occasions. I've asked 2 or 3 doctors I respect how
people with jobs, a family, and/or substandard fiscal, motivational,
disciplinary, and mental resources deal with the overwhelming demands of
advanced cancer. Their answers were pretty consistent; "They give up and
die years sooner than necessary."

One example was the very firm and consistent insistence of 8-10 highly
ranked urological oncologists at several of the nations' top
institutions - plus the federal Standard of Care -- when my PC returned
a decade after surgery that I accept salvage (an initial typo very
fittingly omitted the "l" in salvage) radiation JUST IN CASE it might
help. Instead I researched the hell out of MY CASE and firmly concluded
they were all wrong IN MY CASE. Two of the top radiation oncologists in
the country fully concurred with my analysis, and definitively backed up
my decision and theirs with hard scan data all these oncologists
possessed but ignored, proving salvage radiation would have destroyed my
QOL with zero odds of benefit.

Another example was the insistence of these same cutting edge
oncologists and research hospitals that I must accept immediate,
permanent ADT. Fortunately I had already done that research, with the
obvious and uncontested conclusion that permanent ADT is normally fatal
in less than 30 months ... more like two years median expectation. The
bastards admitted this only when confronted with that fact. My response?
"No, thanks. I'd rather go windsurfing." That was almost 3.5 years ago,
and I'm preparing for our next season of gale force winds and overhead
waves.

[I.P. Freely]

I've had a couple of fluciclovine scans, and now alternate them with
C-11 choline scans in an annual cycle because each has some advantages
over the other. Unfortunately, my cancer advanced very quickly from no
specific, treatable mets to too many to treat locally. The exception was
a spinal met easily and quickly dispatched with one imperceptible dose
lasting a couple of minutes. The rest we control systemically with
several drugs (minus a few I've refused due to minimal benefits and
significant side effects).

I.P.

[jloomis]

Thank You IP
I will see what develops.
my numbers are so low, and then again, the reason for the scan.
To see what there may be and how treatable.
John

"I.P. Freely" wrote in message news:r0d6c9$rvl$1...@dont-email.me...

[LeeLiam]

On Friday, January 24, 2020 at 12:36:41 PM UTC-5, jloomis wrote:
> Thank You IP
> I will see what develops.
> my numbers are so low, and then again, the reason for the scan.
> To see what there may be and how treatable.
> John
>
> "I.P. Freely" wrote in message news:r0d6c9$rvl$1...@dont-email.me...
>
> I've had a couple of fluciclovine scans, and now alternate them with
> C-11 choline scans in an annual cycle because each has some advantages
> over the other. Unfortunately, my cancer advanced very quickly from no
> specific, treatable mets to too many to treat locally. The exception was
> a spinal met easily and quickly dispatched with one imperceptible dose
> lasting a couple of minutes. The rest we control systemically with
> several drugs (minus a few I've refused due to minimal benefits and
> significant side effects).
>
> I.P.
>
> On 1/15/20 1:11 PM, jloomis wrote:
> > Hello IP
> > I am scheduled for a fluciclovine scan at Stanford.
> > they thought I being a good candidate.
> > So far after 3 years of radiation,my PSA has been fluctuating
> > from .5 .9 .7 up to 1.5....and then back to 1.23

John, my understanding is that radiation doesn't kill cancer cells immediately but damages the DNA. The cell dies when it attempts mitosis (splitting) and it releases more PSA at that time. This might explain the fluctuating PSA.

I.P., I hope you are doing well. Can I ask, are you still being treated at Compassionate Oncology? I have had high hopes for you and that protocol.

[jloomis]

Hello LeeLiam,
I go to Stanford Medical Center.
I had radiation 3 years ago.
My numbers have remained low, and seem to go up .7 then down .5 Then
in July 1.5 Then in Dec. 1.2
so, for the past 3 years, this is the trend.
The Oncologist said I was a candidate for the Flucloslovine scan, and to
pinpoint any area of concern.
I figured, that Stanford, having this ability, is worth the try.
I have been fighting this since 1999 with a prostatectomy, and then in 2015
with radiation treatment.
My numbers since 1999 have been .1 to now 1.2 (21 years)
Thank You for your advice and or thoughts.
John

"LeeLiam" wrote in message
news:ecc5ef11-e954-4e8d...@googlegroups.com...

[DanR]

Hey Steve. I joined the group in 2003. It has been a while since I've checked for updates. You just seem to keep set the bar for the rest of us. I RRP in May ff 2003. Positive margins. CALGB trial - mitoxantrone for 3 months, prednisone, Lupron, and Casodex for 2 yrs - PSA and testosterone both pretty much zero. Few years later, the T goes up, and the PSA starts returning. Vitamin D trial of 10,000 IUs a day for 2 years until my the level in my blood was considered toxic. Tried 2 more trials thru NIH. PSA continued to climb slowly. Finally in May 2015 had a fused MRI and ultrasound guided robotic 'salvage' surgery. ... positive margins - kind of parallel to your's. Anyway it looks like my PSA is rising to detectable levels again. Lot's of time to figure what to do. I remember reading a post from you way back when that indicated you pretty much knew you were going to die of PCA. I'm very glad to see that prediction has been wrong to date! Hang in there. DanR

[I.P. Freely]

Oops ... sorry, Lee ... I must have fallen asleep for a couple of months.

Yes, I'm very much still with Compassionate Oncology. If I had succumbed
to heavy pressure from the Mayo Clinic, Fred Hutch Cancer Center, and
virtually every other oncologist on the planet, I'd be dead by now, by
their own admission. Instead, I'm warming up for another season of
windsurfing.

I.P.

[LeeLiam]

On Wednesday, March 18, 2020 at 10:23:38 PM UTC-4, I.P. Freely wrote:
> Oops ... sorry, Lee ... I must have fallen asleep for a couple of months.
>

It's good to hear from you and I'm very glad you are doing well. Di they put you on high T?

[I.P. Freely]

On 3/19/20 2:16 PM, LeeLiam wrote:

> Di they put you on high T?

Yes, as soon as I completed chemotherapy in about June of 2017. My T
usually runs about 2,000, as high as 6,000. Just last week my doc (via
phone consult) expressed great delight at how long I've been on it. I've
even cut out several of my meds with his blessing. Unfortunately, the
most vital med, a daily estrogen, saps some of my energy. I may be GLAD
to have to sacrifice some of my windsurfing and gym time to that bug
that's going around. OTOH, the bug's a great excuse not to fly to LA.

I.P.

[Steve Kramer]

On Thursday, December 13, 2018 at 3:19:55 PM UTC-5, GB wrote:

> On 13/12/2018 16:26, Steve Kramer wrote:
>
> > 3. I’ve had people from seven denominations praying for me (faith).
>

> Hi, Steve. I'm an atheist. Would you like me to pray for you, too? I'm
> quite happy to do so, paradoxical as it may seem. Of course, I won't
> believe it will help, but as long as you think it might I'm happy to
> oblige. :)


Hi, me. For some reason this just came up on my screen.

I hope that in the last year or so you have come around to accepting God - the knowledge of Whom predates Jesus Christ on Earth. Three centuries before Christ, the greatest philosopher before Aquinas - Aristotle - came to the conclusion without Biblical influence. My personal acceptance came through yet another genius scientist, Buckmisinster Fuller.

Life on earth for a believer is far more difficult, it seems, than for one who has not afterlife expectations. But if you make a concerted effort to find Him, you will succeed.

[Steve Kramer]

Good to see you still around, I. P. I was a little worried for you a couple of years ago.

[Steve Kramer]

Good to see you too! You're always a year ahead of me. :-)

[Steve Kramer]

On Tuesday, February 25, 2020 at 5:40:04 PM UTC-5, DanR wrote:
> Hey Steve. I joined the group in 2003. It has been a while since I've checked for updates. You just seem to keep set the bar for the rest of us. I RRP in May ff 2003. Positive margins. CALGB trial - mitoxantrone for 3 months, prednisone, Lupron, and Casodex for 2 yrs - PSA and testosterone both pretty much zero. Few years later, the T goes up, and the PSA starts returning. Vitamin D trial of 10,000 IUs a day for 2 years until my the level in my blood was considered toxic. Tried 2 more trials thru NIH. PSA continued to climb slowly. Finally in May 2015 had a fused MRI and ultrasound guided robotic 'salvage' surgery. ... positive margins - kind of parallel to your's. Anyway it looks like my PSA is rising to detectable levels again. Lot's of time to figure what to do. I remember reading a post from you way back when that indicated you pretty much knew you were going to die of PCA. I'm very glad to see that prediction has been wrong to date! Hang in there. DanR

Hi, DanR. thank you for your thoughts.

[jloomis]

Hey, we are all here still, only thing is we are wearing masks now!
Wish you all the best. John

"Steve Kramer" wrote in message
news:f57dbb55-e253-4b07...@googlegroups.com...

[hiker...@gmail.com]

On Thursday, December 13, 2018 at 11:26:57 AM UTC-5, Steve Kramer wrote:
> Back again to update this wonderful group who was there for me so many years ago.
>
> On December 15, 2000, at 46, I underwent open surgery to remove my prostate. It had killed my great-grandfather, my grandfather, and my father and it was one of the more aggressive my surgeon (rated No. 1 in Cincinnati at the time) had seen, though he graded it as T1c, 3+4=7, with a 16 PSA. After a biopsy, he said I had a 66.6667% chance of catching it in the prostate with surgery. We did not.
>
> During May through July 3, 2002, I underwent 35 radiation treatments. My radiation oncologist rated my chances at 50/50 of living 10 years if the radiation caught it in the prostate bed. It did not.
>
> I think it was December 2002 that I began Lupron. The gold standard at that time was Lupron, expected to work up to 2 years; add Casodex, expected to work up to 2 years; add Zolodex, expected to work up to 2 years; chemotherapy; death.
>
> Lupron worked for me for 3 years. We added Casodex. So far, it’s lasted 12 years. My PSA has been a straight line at 0.10 for three years after being <0.10 for 9 years.
>
> My secret? I dunno. But, I think it involves the following:
>
> 1. I walk 95 to 100 miles a month on average (now proven to help with PCa and BCa).
>
> 2. I eat spicy foods when available (about 150,000 Scoville units – studies inconclusive).
>

> 3. I’ve had people from seven denominations praying for me (faith).
>

> I am retired, celebrating my 43rd Anniversary today, and enjoying my three children, their spouses, and thirteen grandchildren. My cancer is incurable, but so far, I’m kicking it’s ass.

Hi All, Haven't been on for a number of years. I had Gleason (3+4)=7 PSA 6.2 enlarged prostate at 62years old. Had a LRP and everything looked good. A couple times my PSA hit 0.1 but returned to <0.1 next time around. I'm now 79 and it's been almost 17 years. Three years ago my PSA came back as 0.2 and the following year 0.3 and this year 0.1. I don't exercise but do golf about three times a week. I'm 6'1" and 230#. A year ago I had Quad open heart surgery but it didn't seem to cause any problems. I feel fine. I don't worry about my PSA at my age and will monitor it yearly.

Nice to see you all again,
Ron Spane

[I.P. Freely]

Not that it helps Ron, but others newer to the club might benefit from
the evidence that Gleason 3+4 behaves very much like G 3+3, which in
turn behaves much like not-cancer. IOW, a guy w/3+4 who wants to avoid
the short and long term hassles of PC treatment can often just monitor
his PSA for decades and find that his 3+3 or 3+4 is little more than a
number on a slip of paper. (4+3=7 is a different matter.)

I.P.

[Phillip Helbig (undress to reply)]

In article <rbiu76$ihi$1...@dont-email.me>, "I.P. Freely"

<fugedd...@noway.nohow> writes:

> Not that it helps Ron, but others newer to the club might benefit from
> the evidence that Gleason 3+4 behaves very much like G 3+3, which in
> turn behaves much like not-cancer. IOW, a guy w/3+4 who wants to avoid
> the short and long term hassles of PC treatment can often just monitor
> his PSA for decades and find that his 3+3 or 3+4 is little more than a
> number on a slip of paper. (4+3=7 is a different matter.)

I had 3+3 then 3+4. If that is the ONLY change, no problem. However,
around the time it changed to 3+4, the PSA skyrocketed, and the tumor
started growing. So, a bit more than 2 years after the first biopsy,
and 6 years after knowing that the PSA was elevated (it had probably
been so for another couple of years before that), I opted for focal
treatment with HIFU, though I wasn't an ideal patient, since I had two
separate tumors, one on each side. It worked, but not enough, so I
opted for surgery a year later. The tumor was less than a tenth of a
millimetre from the edge of the prostate, but still inside. I had a
good surgeon and essentially no long-term side effects.

Take-home lesson: wait as long as possible, but not longer.

[I.P. Freely]

Good point. :)

I.P.

[Phillip Helbig (undress to reply)]

In article <rbjuf6$r13$1...@dont-email.me>, "I.P. Freely"
<fugedd...@noway.nohow> writes:

> Good point. :)

Make sure that the surgeon's scalpel also has a good point. :-)

> > Take-home lesson: wait as long as possible, but not longer.

Especially with surgery, having an operation sooner rather than later
can result in fewer side-effects.

[Robert Charles Taylor]

On Thursday, December 13, 2018 at 3:19:55 PM UTC-5, GB wrote:
> On 13/12/2018 16:26, Steve Kramer wrote:
>

> > 3. I’ve had people from seven denominations praying for me (faith).

> Hi, Steve. I'm an atheist. Would you like me to pray for you, too? I'm
> quite happy to do so, paradoxical as it may seem. Of course, I won't
> believe it will help, but as long as you think it might I'm happy to
> oblige. :)

Hi Steve, glad to hear you were doing well (as of 4 years ago). I've been undetectable for about 15 years after undergoing chemo therapy, prostatectomy, radiation and several rounds of intermittent hormonal treatment (lupin + casodex). About 15 years when I stopped a round (after several months), PSA never went up again, surprising me and my doctors at MGH.

[Steve Kramer]

No, thank you, Robert. I wish you a very long life ... in this life.

[I.P. Freely]

It's good to see some activity here. It's been a long time.

As a refresher, I was diagnosed with Stage IV in 2016 and prescribed to
go on permanent ADT by many oncologists in accordance with the
government standards of care. My prognosis was a couple of years -- not
because of my cancer but because that's what ADT does to us even aside
from its CVD threat. I refused based on science (do your homework!) and
trusted (and still trust) my life with the Compassionate Oncology
Medical Group in Los Angeles. Rather than succumbing in 2018, I have
been in remission (zero cancer drugs) for 18 months. I'm still castrate
sensitve, still active in demanding sports, and my PSA has been
undetectable for those 18 months. Every update about PSMA technology
gives me and my oncologists hope for a much longer life than expected
just a few years ago.

I.P. Freely -- TOO freely if my artificial sphincter weren't doing its job.

[LeeLiam]

It is so good to hear from you guys. I think about you all the time.

[Alan Meyer]

Son of a gun! A bunch of the old guys from the old group are still
alive and even thriving. I'm still here too and I'm glad to see that
the three of you are doing well.

My best regards to all of you.

Alan