results of 6th months of HT

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colophony - 17 Feb 2007 12:16 GMT

to keep group updated on progress of my HT, today I got the results of my
blood test.
PSA shows 0,103 and Testosterone 0,17.
I will talk to doctor on monday, meantime need your input on results (3
months ago PSA 0,132 and Testosterone 0,28) Need also your experience or
knowledge on possibility to use intermittent HT at the end of the 9th month
instead of one full year.My ninth month will expire the 10th of May and I
really hope doctor agrees to stop HT for a while.
Colophony

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Steve Kramer - 17 Feb 2007 13:04 GMT

> to keep group updated on progress of my HT, today I got the results of my
> blood test.
> PSA shows 0,103 and Testosterone 0,17.

That's great news!

I'll let someone else more learned discuss with you IADT.

Signature

PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04
Non Illegitimi Carborundum

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Heather - 18 Feb 2007 22:01 GMT

Hi Colophony......see below.

> to keep group updated on progress of my HT, today I got the results of
> my blood test.
[quoted text clipped - 6 lines]
> a while.
> Colophony

I guess no one else is using intermittent HT, but my husband Ron is.
And we go for his next PSA test in about 2 weeks.

A short synopsis is that he had a fairly new radiation procedure here in
Canada almost 4 years ago.....HDR (High Density Radiation), followed by
25 EBRT treatments. His PSA went from 10 to 3.5 but stayed at 3.6 in
six months (Feb. 2004). I wasn't happy about this, but the doctors said
it was not abnormal.

By the way, HDR is not done as much in the US simply because it costs
$50,000 and most insurance companies won't pay for it. Ron was part of
a study, as was Alan Meyer in the US. The older posters will remember
Fernando Campo.....he looked into HDR at Loma Linda and sent me that
information re cost and insurance companies.

In August that same year his PSA had soared to almost 13 and went up 3
FULL points (3.0) in 8 days. And kept on climbing. By October it was
over 24. We stopped testing. He had a bone scan and an ultra sound and
a chest x-ray....nothing really showed up. He went on hormone therapy
(Zoladex and Casodex) on Oct. 26th, 2004. His PSA dropped to 0.02 over
Xmas!

He was fine for about 7 months, which apparently is quite unusual, 3
being the norm. But then his male muscle mass started disappearing and
his strength was very poor and he had gained about 25 lbs, not to
mention rather depressed.

At this point, due to inclement Winter weather, we were getting his HT
shots here in our City but this medical oncologist was not on the ball
like our Toronto radiation oncologist. He barefaced lied to me and said
not ONE of his 200 patients on HT had side effects like Ron's and he
probably had some other serious disease!! (BAM.....FIRED!!)

I phoned our rad onc, Dr. Loblaw at Sunnybrook Hospital in Toronto, in
November 2005 and told him what was happening and he saw him immediately
and advised coming off all meds. That admittedly scared Ron so he had
one more shot and later wished he hadn't. So that shot was at the one
year mark.

He has been off all hormone therapy for a year now and has regained most
of his strength and is slowly losing the weight. Dr. Loblaw said that
he seemed to have far worse side effects from the HT than most patients.
It takes about 7 months for your testosterone level to come back up to
normal. We have been testing for that and PSA every 3 months. Our
numbering system for testosterone is the same as yours, Colophony. And
apparently the norm is about 3.50 or 4.00. Ron was down as low as yours
is when he decided to come off the HT.

So, to wind up this long story, rest assured that the choice is strictly
up to YOU!! If you choose to end it at 9 months, then so be it. And it
takes a long time for the good and bad effects to leave your system.
About 7 months once again in Ron's case.

We know that should his PSA go up once again that he will be back on HT
but for a shorter period. And Casodex will NOT be included. Just
Zoladex. So for the first time in 4 years, we get very apprehensive at
test time.

I will report in once we get the clinical results on March 15th because
there seems to be *strange things afoot* here. The doctor is happily
baffled because he has seen 3 patients as of last September whose PSA
dramatically shot up to 20 and then dropped to undetectable.....no
earthly explanation for any of them. He said then that if Ron's PSA
stayed down (and it did), that he was writing a paper for the medical
journals. I prefer to get one more test under my belt before I stop
holding my breath.

Hope this helps and hey guys, keep your fingers and toes crossed. I am
tired of being scared and depressed!! Plus I am just recuperating from
a nasty jaw surgery and don't think I want to see a hospital again for
at least 10 years!! (G)

And for those who worry about a PSA rise of 0.01 or 0.02......please
stop and reflect on how we felt with a rise of "3.0" in 8 days. THAT is
frightening. 0.01 is NOT. I realize that any rise is worrisome, but a
small one should be taken with a grain of salt until there are 3 rises.
Easier said than done though.

The opinions expressed are my own and the good and bad facts on Ron's
travails with HT are well documented by both Sunnybrooks' Cancer Care
Centre and my own notes. Threw that in just to keep you know who happy.

If you need any more info, I will write you off list and I assume your
email address is not munged.

Best....Ron and Heather

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kh - 19 Feb 2007 11:07 GMT

> I phoned our rad onc, Dr. Loblaw at Sunnybrook Hospital in Toronto, in
> November 2005 and told him what was happening and he saw him immediately
> and advised coming off all meds.

...

> I will report in once we get the clinical results on March 15th because
> there seems to be *strange things afoot* here. The doctor is happily
[quoted text clipped - 4 lines]
> journals. I prefer to get one more test under my belt before I stop
> holding my breath.

Do you know anything about the other patients? I'm wondering if
there is a common link.

> And for those who worry about a PSA rise of 0.01 or 0.02......please
> stop and reflect on how we felt with a rise of "3.0" in 8 days. THAT is
> frightening. 0.01 is NOT. I realize that any rise is worrisome, but a
> small one should be taken with a grain of salt until there are 3 rises.
> Easier said than done though.

That's the problem with PSA. It's a number. In some cases, active,
growing Prostate cancer tissue produces PSA. In other cases, dieing,
inactive Prostate cancer tissue produces PSA, or so the theory goes.

> The opinions expressed are my own and the good and bad facts on Ron's
> travails with HT are well documented by both Sunnybrooks' Cancer Care
> Centre and my own notes. Threw that in just to keep you know who happy.

What is Ron's complete PSA history. If you have it in the form:

12/1/2004, 14.3, "optional comment "
2/15/2005, 5.0, "comment"

This will cut and paste directly into Excel.

Then use the graph wizard to create an X-Y graph with a date-axis and
you'll be able to see the entire story.

-kh

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Heather - 20 Feb 2007 22:41 GMT

Hi Kh.....see inline.

>> I will report in once we get the clinical results on March 15th
>> because
[quoted text clipped - 8 lines]
> Do you know anything about the other patients? I'm wondering if
> there is a common link.

No, not really. I think the one fellow was in his 60's and he turned
down going on HT as his PSA was hitting close to 20......it then did an
abrupt turnabout and was undetectible on the next test. But I will see
if I can find out.

>> And for those who worry about a PSA rise of 0.01 or 0.02......please
>> stop and reflect on how we felt with a rise of "3.0" in 8 days. THAT
[quoted text clipped - 6 lines]
> growing Prostate cancer tissue produces PSA. In other cases, dieing,
> inactive Prostate cancer tissue produces PSA, or so the theory goes.

Hadn't thought of it that way. When Ron's went skyhigh, it was in the
latter part of the first year after his radiation. It went from 3.6 at
6 months after.....to almost 13 a year later.

>> The opinions expressed are my own and the good and bad facts on Ron's
>> travails with HT are well documented by both Sunnybrooks' Cancer Care
[quoted text clipped - 10 lines]
> Then use the graph wizard to create an X-Y graph with a date-axis and
> you'll be able to see the entire story.

Thank you. I will pull it together and perhaps send it to you? Or
maybe it is time I learned how to use Excel. I have the info in about 3
places, so this would organize me. I try to keep it all in a notebook
and we don't get copies of PSA reports.....verbal is fine by us.

Cheers.....Heather

> -kh

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kh - 21 Feb 2007 01:06 GMT

> Thank you. I will pull it together and perhaps send it to you? Or
> maybe it is time I learned how to use Excel. I have the info in about 3
> places, so this would organize me. I try to keep it all in a notebook
> and we don't get copies of PSA reports.....verbal is fine by us.
>
> Cheers.....Heather

I check the address connected with this google-groups account about
once a week since it's a web-mail account.

Please send the data to my pop3 email address,

makiki
at-sign
attglobal . net

I'll build the spreadsheet and email it back with my data, which is
NOT good news but matches the reports. If you don't mind, I'll drop
Steve Kramer a copy of the sheet, he seems to be the data collector.
At some point, I should generalize the sheet, turn it into a blank
template so that anyone can graph their PSA. The part I haven't
figured out is how to make the years self align to the data. I know a
real Excel pro so maybe I can impose on him. I should make it clear
that this pro helped me get the graph working and that I spent days
"futzing" around with Excel, getting nowhere.

When you show it to your doc, he'll probably want a copy.

When I went off Lupron, my PSA began rising, slowly at first which was
expected, then the last two 3-month results are a rising arc. You'll
see it in the Excel graph when I send it back. My last PSA was over
20, which strikes me as strange as it was steady at about 10 for 3
years prior to diagnosis.

"What did you do, Doc, anger it?"

My theory is that as treatment has gotten more precise and seed
placement more "regular", in the sense of a 3 dimensional grid. As
they've amp'ed up the external radiation with IMRT, the prostate
tissue die-off, that used to occur haphazardly, has been phase-aligned
in time.

They can amp up with IMRT because they know they're not going to
scorch the colon.

Since last summer, I've had a bone scan, a PET-scan (not yet approved
for prostate cancer diagnosis, but soon), a Prostascint at Johns
Hopkins (considered one of the two top places), all have been
negative. Well sorta, the bone-scan found a hot-spot in my spine but
a subsequent MRI showed that I had a compression fracture from lifting
150 pounds. I've started taking calcium supplements.

I'm guessing that the tissue die off used to happen, not over 1, 2, 3,
or 4 years, but more like 4, 5, 6 and irregular. A lot here, then
nothing, then more. Very irregular.

With the "perfect" seed placement and absolutely even, smooth IMRT
radiation, the die-off happens all at once, in perfect phase.

I think that's what's going on with Ron and the other 3 men. That's
just a data analyst's guess.

I have my next PSA in March, same as Ron. I'll be having a chest
biopsy there after. The MRI and another scan picked up "something"
and of course, the docs are hot on the trail of metastatic prostate
cancer.

Given my "scorched earth" treatment there's no way there's any cancer
left in or near my prostate. This is either an artifact of the
treatment or horrible timing; it went extreme-aggressive and
metastatic just as I was diagnosed.

-kh My preference is that it's an artifact but I'm preparing for
worse news.

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Heather - 21 Feb 2007 05:33 GMT

Thanks for the offer. I will certainly get it ready and send it in the
next day or so. And I have no problem with Steve K. having a copy. He
corrects me when I get something wrong......must be something to do with
his being a hell of a lot younger.....LOL.

Both you and Alan have given me some relief today. I had no idea why
Dr. Loblaw was so excited about his interpretation of what was happening
and he is a researcher as well as an excellent rad onc. He was still
*putting it together* last Sept.

I will write more later......falling asleep on the keyboard, lol.

Thanks.....Heather
PS....also sending it to your address to make sure I got it right.

>> Thank you. I will pull it together and perhaps send it to you? Or
>> maybe it is time I learned how to use Excel. I have the info in
[quoted text clipped - 72 lines]
> -kh My preference is that it's an artifact but I'm preparing for
> worse news.

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Steve Kramer - 22 Feb 2007 20:34 GMT

> Thanks for the offer. I will certainly get it ready and send it in the
> next day or so. And I have no problem with Steve K. having a copy. He
> corrects me when I get something wrong......must be something to do with
> his being a hell of a lot younger.....LOL.

It's like shootin' fish in a barrel :-)

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Alan Meyer - 21 Feb 2007 01:29 GMT

Heather,

I'm going to venture a totally off-the-wall idea, not
based on any serious scientific knowledge.

First, some known facts:

1. Radiation doesn't work all at once. It takes up to
three years to do its job. The reason is that it damages
the DNA in the cancer cells, but the cells don't die
unless and until they start to divide and multiply,
which can take a while (in test tubes they divide
every 2 months, but apparently no one knows how long
they take in the body where various regulatory factors
are at work.)

2. Radiation also stresses the prostate tissue, often
causing temporary increases in PSA (the famous "bounce").
The most common bounce values are below 5, but higher
ones have been recorded. "High Dose Rate" brachytherapy
apparently has especially high frequency of bounces
(one of the ideas developed in the study I was in.)

3. Hormone therapy is thought to enhance the effects
of radiation - helping the radiation to kill the cells.

Now for some speculation:

Is it possible that, even though Ron's PSA went up, he
did not yet finish getting all the benefit from his
radiation? Is it possible that the damage done by
the radiation was enhanced by the HT that Ron started?
Is it therefore possible that Ron's cancer is either
knocked out completely (let's not get our hopes up too
high here), or more likely set way back and slowed down
by the combo of radiation and HT?

If not, then I'm still very optimistic about Ron's future.
His cancer's response to HT was terrific. It seems likely
that, if it becomes necessary to go back on, he may be
able to go back on for short periods to get it under
control quickly and then have long off periods.

Also, the secondary hormone therapies - that don't
necessarily have the same side effects - may also work
very well for him. If his PSA rises again, talk to
the med onc about trying one of those, e.g., estradiol
or estrogen, etc.

Finally, the amount of time it takes to recover from HT
apparently varies with the length of time you are on it.
I was only on a short time (one one month and one three
month injection) and started to come back about five
months after my last injection. My testosterone was
normal by six months. If Ron does have to go back on
HT, he may find he will recover faster if he's on for
a shorter time.

Best of luck to you and Ron.

Alan

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Heather - 21 Feb 2007 05:50 GMT

Hi Alan......

Your thoughts are maybe not so off the wall as you think. I will have
to ask Dr. Loblaw in March about this. I can see I will be giving him
some reading, grin. But you could be right about the bounce after HDR.

As for estrogen, I did ask him in September and he is most definitely
not in favour of it. Side effects, I believe.......but my memory could
be faulty as to the reason.

Thank you for your *off the wall* analysis. You may be more right than
you think. However, I find that this year has been tougher for me in a
lot of ways than the preceding three. Living *under the gun* will do
that to you, I guess.

Anyway, I am sitting here apprehensive as hell over the coming PSA test,
which a good friend insists will be just fine.......but somehow I can't
get my mind wrapped around that. If this one comes out OK, I will relax
for a bit.

We are hoping to get over to Portugal this June.....but like everything
in our lives these days, it depends on how Ron is doing. Our daughter
will be coming with us as "tour guide and Sherpa"....lol. The 3 of us
went to Prince Edward Island and Nova Scotia this past July and
thoroughly enjoyed ourselves. Ron managed to do all the driving and
walk better than we expected.

Will write later......as I said to *kh*, I am falling asleep on the
keyboard.

Best......Ron and Heather

> Heather,
>
[quoted text clipped - 57 lines]
>
> Alan

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Steve Kramer - 22 Feb 2007 20:40 GMT

> Hi Alan......

> As for estrogen, I did ask him in September and he is most definitely not
> in favour of it. Side effects, I believe.......but my memory could be
> faulty as to the reason.

I talked to my doc about Estrogen. He believes the government is pushing it
because it is a lot cheaper than Lupron. He also talked of the terrible
things it does to a man's body. I filled in teh details with my memory of
my father's experience with Estrogen. Eventually, aside from all other
issues, caused him a heart attack.

Signature

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ron - 22 Feb 2007 21:05 GMT

> I talked to my doc about Estrogen. He believes the government is pushing it
> because it is a lot cheaper than Lupron.

Steve...Just how is the government "pushing" it? I see very little
discussion of its use in general. IMO the real question is why isn't
the public demanding it be further tested? At $115 for a 3 month
supply of transdermal patches vs. $1400 or so for a 3-month Lupron
depot injection, it could be a win-win for the government and the
patient.

> He also talked of the terrible
> things it does to a man's body. I filled in teh details with my memory of
> my father's experience with Estrogen.

What "terrible" things would that be? Aside from a 60% or so rate of
grade I or 2 gynocomastia, it improves memmory function, improves bone
mass density, does not produce hot flashes, improves lipid profiles
and has a long-term beneficial cardio effect.

> Eventually, aside from all other issues, caused him a heart attack.

Steve, I'm sorry about your dad. Heart attacks and strokes were known
risks associated with oral estrogen. The parenteral route has
demonstrably solved the cardio and thrombolytic problems that were
inherent in the oral overdoses used previously in mainstream US
hormonal treatment.

I don't use HT, so I don't have a dog in this fight. But I hate to
see a promising treatment that has been "reinvented" slammed without
hard facts about the current protocol presented...Best wishes and good
health, ron

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Steve Kramer - 23 Feb 2007 00:48 GMT

>> I talked to my doc about Estrogen. He believes the government is pushing
>> it
>> because it is a lot cheaper than Lupron.
>
> Steve...Just how is the government "pushing" it?

I don't know, ron. I was taken aback by his reply. In six years, I've
never heard anything that sounded political or even negative from the man.

However, I suspect the government connection would be through the NIH.

> What "terrible" things would that be? Aside from a 60% or so rate of
> grade I or 2 gynocomastia, it improves memmory function, improves bone
> mass density, does not produce hot flashes, improves lipid profiles
> and has a long-term beneficial cardio effect.

It was blaned 20+ years ago for nearly destroying most of my father's organs
and for his heart attack. To be honest, I never researched it for SEs.

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colophony - 19 Feb 2007 16:23 GMT

Ron and Heather thanks for your advice.
The e mail address is valid and got your input in my mail box.
Wish yours be ok
Colophony

> Hi Colophony......see below.
>
[quoted text clipped - 95 lines]
>
> Best....Ron and Heather

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