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From: Joanne on 28 Dec 2005 12:29
PSA 18.9 04/20/2002 @ 50
Biopsy 05/07/2002 Gleason Grade (3+3),
RRP 06/26/2002 G7 (3+4), T3a Neg margins .No recommendation to start
any treatment following surgery.
PSA <.1 .2 .3 .7
Started Casodex 6/7/03
After 1 mo was .8, then .8 .9 .9 .7 .6 .6 .7 then it went to 1.0 in
Jan 2005
In April 05 PSA reading was up to 2.6
In July 05 PSA reading was raised to 3.1 (Lupron recommended to
begin)
1st Lupron shot 07/27/05 - 1st PSA taken 4 mos later was .6
The 2nd Lupron shot was on 11/17/05.
11/21/05 - Bone Scan and CT Scan of Chest, Abdomen and Pelvis - both
were clear. They recommended start radiation ASAPso it started on
12/22/05.

Hi guys... My husband started radiation last Thursday (12/22/05) & we
are wondering about the side effects we can expect. He's pretty nervous
about this whole radiation thing & it's been okay so far but it's only
his 4th dose today. I know it's hard to say but in general, what can
he expect? Will it get really bad or are the effects bearable? Also, if
you could let me know (after reading his history above) if you think
he's been given the proper advice at the different stages of this. In
looking back he kind of wishes he didn't do the surgery (which was at
Northwestern Memorial Hosp in Chgo) & just had taken his chances with
the seeds. As usual, any info/advice is VERY much appreciated. You are
so helpful.
Joanne

From: ron on 28 Dec 2005 13:20
Joanne wrote...snip...
> PSA 18.9 04/20/2002 @ 50
> Biopsy 05/07/2002 Gleason Grade (3+3),
> RRP 06/26/2002 G7 (3+4), T3a Neg margins .No recommendation to start
> any treatment following surgery.
> PSA <.1 .2 .3 .7
> Started Casodex 6/7/03
> After 1 mo was .8, then .8 .9 .9 .7 .6 .6 .7 then it went to 1.0 in
> Jan 2005
> In April 05 PSA reading was up to 2.6
> In July 05 PSA reading was raised to 3.1 (Lupron recommended to
> begin)
> 1st Lupron shot 07/27/05 - 1st PSA taken 4 mos later was .6
> The 2nd Lupron shot was on 11/17/05.
> 11/21/05 - Bone Scan and CT Scan of Chest, Abdomen and Pelvis - both
> were clear. They recommended start radiation ASAPso it started on
> 12/22/05.
>
> As usual, any info/advice is VERY much appreciated

Hi Joanne...I can't comment on your question concerning radiation side
effects, I'll leave that to others with first-hand experience.
However, a few things in your husband's hormonal treatment caught my
eye, so I'd like to pass along a few thoughts. First, I presume your
husband now has a medical oncologist who specializes in prostate cancer
on his team. A surgeon or radiation oncologist may well be out of his
or her league in terms of hormonal manipulation. Many PCa oncologists
would not have administered a 4 month lupron shot at the outset; and if
one did, he or she likely would have followed the PSA, testosterone and
DHT levels on a more frequent (monthly) basis. Whoever prescribed the
shot knows something, because I see the follow-up shot was given 112
days later, not 4 months. That is good. In any case, the fact that
your husbands PSA was 0.6 ng/ml on 11/27/05 is of note. It suggests
that either:
1) the first shot wore off earlier than expected, your husband's PSA
rose significantly and the second shot was only able to bring it down
to 0.6 in 10 days;
2) Lupron + Casodex is not a very effective combination for your
husband (this can be sorted out by measuring luteinizing hormone,
testosterone and adrenal androgen levels), increasing dosage or
switching to a different LHRH agonist are possibilities in such a
case);
3) sometimes the lupron injection is not absorbed well by the body and
hence, can't "do the job"; was there a knot or signs of allergic
reation at the injection site?
4) your husband has cancerous cells that are androgen independent and
do not respond to the hormonal therapy currently being administered.

Your husband appears to have what is often termed advanced disease. It
is to both of your advantage to have an oncologist who specializes in
PCa on your team. PSA, T and DHT levels should be followed monthly,
until a clear pattern emerges and the lowest PSA, T and DHT levels
achieved are ascertained. These levels will let you determine just how
effective the current treatment is. Ask the oncologist what it means
that your husband's last PSA came back at 0.6 ng/ml. Ask him if this
is where it should be (the answer should be "no"). Ask the oncologist
what should be done to get the PSA level lower (investigating the
efficacy of the current lupron dosage, adding proscar or finasteride to
the mix, etc. are likely answers; if it is determined that your
husband's PSA is largely androgen independent, then a different course
of therapy should be recommended). I hope this is of some help...Best
wishes and good health, Ron

From: Steve Jordan on 28 Dec 2005 13:31
On December 28, Joanne wrote:
> PSA 18.9 04/20/2002 @ 50
> Biopsy 05/07/2002 Gleason Grade (3+3),
> RRP 06/26/2002 G7 (3+4), T3a Neg margins .No recommendation to start
> any treatment following surgery.
> PSA <.1 .2 .3 .7
> Started Casodex 6/7/03
> After 1 mo was .8, then .8 .9 .9 .7 .6 .6 .7 then it went to 1.0 in
> Jan 2005
> In April 05 PSA reading was up to 2.6
> In July 05 PSA reading was raised to 3.1 (Lupron recommended to
> begin)
> 1st Lupron shot 07/27/05 - 1st PSA taken 4 mos later was .6
> The 2nd Lupron shot was on 11/17/05.
> 11/21/05 - Bone Scan and CT Scan of Chest, Abdomen and Pelvis - both
> were clear. They recommended start radiation ASAPso it started on
> 12/22/05.
>
> Hi guys... My husband started radiation last Thursday (12/22/05) & we
> are wondering about the side effects we can expect. He's pretty nervous
> about this whole radiation thing & it's been okay so far but it's only
> his 4th dose today. I know it's hard to say but in general, what can
> he expect? Will it get really bad or are the effects bearable?
The side effects (SEs) experienced by patients can be expected to differ
for each one, although there are also similarities.

Joanne does not specify which radiation treatment (tx) is in use. From
the context, I assume that it is
"EBRT" also known as External Beam Radiation Therapy. But is it 3DCRT
(three-dimensional conformal radiation therapy), the more modern IMRT
(intensity-modulated radiation therapy), proton, other?

I had IMRT, ending in October, 2004. My SEs were fairly typical, though
I consider them relatively mild. They consisted of urinary and
(short-lived) bowel urgency. I understand that erectile difficulties may
develop, but as I was already impotent from previous tx, I cannot
testify from experience.

I have been on LHRH agonists such as Lupron since September, 2004. This
is called adjuvant ADT (androgen deprivation therapy). So far, I have
clocked undetectable PSAs each month since January, 2005. I suggest the
28-day dosage because it matches the FDA-approved dosage. Three-month
dosages are usually on a three calendar-month cycle instead of the 84
days the manufacturers recommend. The three-month cycle is demanded by
Medicare and many if not all insurers because they save money that way.
As I see it the three- and four-month cycles are not medically required;
they're just for convenience.

I also recommend the ultra-sensitive PSA tests, because they can give
early warning if PSA is rising. For example, if PSA rises over time from
..1 to .2, the patient will be unaware of it unless the ultrasensitive
test is used. In that case, an increase from, say, .10 to .12 to .15 to
..19 will be detected. Not so with the other test.

I strongly recommend reference to the website of the Prostate Cancer
Research Institute at: http://prostate-cancer.org/index.html

A very thorough article on IMRT and its SEs can be found on the site at:
http://www.prostate-cancer.org/education/localdis/Chaiken_IMRT.html

I also strongly recommend _A Primer on Prostate Cancer_ subtitled "The
Empowered Patient's Guide"
by oncologist and PCa specialist Stephen B. Strum, MD and Donna
Pogliano, PCa warrior. It can be ordered via the PCRI website.
> Also, if
> you could let me know (after reading his history above) if you think
> he's been given the proper advice at the different stages of this.
It would be foolish and possibly harmful for me or anyone else not
medically qualified and throughly familiar with his medical history to
presume to give medical advice. Having said that, I will say this: I do
not see anything terribly out of place about the tx. But I could be wrong.
> In
> looking back he kind of wishes he didn't do the surgery (which was at
> Northwestern Memorial Hosp in Chgo) & just had taken his chances with
> the seeds.
The standard advice is: thoroughly study one's individual case and the
available txs, make a choice, don't look back. I admit that, having
undergone a very thoroughly-botched initial tx, it is difficult for me
to follow that advice.

I do wonder, though, why the radiation oncologist has not briefed the
patient on SEs. That's part of his duty to the patient. Recommendation:
study the above materials, then ask questions from a foundation of
knowledge. Lots of questions.

Study, Learn, Take Charge!

Knowledge is Life.

Regards,

Steve J

"We must tailor the treatment to the nature of the disease. We must
listen to the biology."
-- Stephen B. Strum, MD
From: Clarence Crow on 28 Dec 2005 14:54
On 28 Dec 2005 09:29:23 -0800, "Joanne" <jmurphy811(a)comcast.net>
wrote:

<snip>
>Hi guys... My husband started radiation last Thursday (12/22/05) & we
>are wondering about the side effects we can expect.
<snip>
The "core" side effects are usually explained in a booklet you get on
"Pelvic Radiation". These present mild Urinary, Gastric and Skin
Irritation symptoms, which can usually be minimised by simple
protective means.

However other side effects present themselves when the patient has
other previous medical conditions at entry to EBRT.

Additionally, some side effects can occur from Targeting Errors and
"Overspray" from day to day. The patient usually has a baseline tattoo
mark on each of his hips. These marks are established at a prior CT
Scan when his bladder is comfortably full (in order to let the
prostate drop down approx. 10-12mm to minimise the possibility of
damage to the base of the bladder.)
Then each day the senior Technician establishes a "centre-line" mark
near the sternum, and after a few adjustments, the treatment begins.
NB: The patient must always have a bladder which is comfortably full
as for the CT Scan.
In all Radiation Treatments it is a recognised fact that the prostate
moves from day to day, so the Target Area established from the CT scan
has a concentric increase of approx. 10mm to ensure the Prostate
receives the prescribed dosage.
Whilst this can be beneficial in the fact that the rays cover more of
the Pelvic Area thus picking up any Extra Capsular Extensions and
Lymph Nodes that may have escaped prior detection.
The downside of this is that it can also interfere with otherwise good
Lymph Nodes and later cause Lymph[o]edema (swelling to lower legs,
ankles and feet.)

I'm sure there are other SEs that I haven't covered here, but I'm
relating my OWN experiences.


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From: Clarence Crow on 28 Dec 2005 15:02
On 28 Dec 2005 09:29:23 -0800, "Joanne" <jmurphy811(a)comcast.net>
wrote:

>PSA 18.9 04/20/2002 @ 50
>Biopsy 05/07/2002 Gleason Grade (3+3),
>RRP 06/26/2002 G7 (3+4), T3a Neg margins .No recommendation to start
>any treatment following surgery.
<snip>
Sorry, please disregard most of my previous diatribe on EBRT poss SE's
as I overlooked the fact that this was Salvage Therapy, usually done
to the Fossae of the Prostate post removal by surgery.

There ARE others in this group who are receiving similar salvage
Radiation treatment and can respond with their own experiences.

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