Joanne wrote...snip...

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

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.

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.

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

First, I wouldn't let a doctor treat a hangnail before I understood all the
likely effects, primary and side, of the treatment first. I'd scan even the
possible but unlikely effects just in case I had any unusual
susceptibilities to them (e.g., three users out of 100,000 had their left
leg fall off; all were named I.P. Freely. and lived in ...) I've had various
docs try to give me many treatments ranging from pills to injections to
surgery over the decades, some involving almost certain collateral damage,
when the right cure was physical therapy, stretching, an occasional Tylenol,
rest, etc.

I would ABSOLUTELY not accept ANY treatment as serious, as life-affecting,
or as SE-laden as cancer treatments without scores to hundreds of hours of
research first, for many reasons:
A. We have the time. This is a slow disease.
B. Some docs care only about their statistics at worst, our heartbeat at
best, with no regard for the patients' priorities, preferences, or
pre-existing propensities (how are your husband's LUTS, for example -- a
major question to be answered before opting for radiation). (If you don't
know what LUTS are or HIS LUTS are, and don't understand radiation's threat
to bowel performance -- especially with pre-existing bowel symptoms -- you
haven't done enough research yet to choose radiation.
C. Many docs, according to other docs, are pretty clueless about SEs, even
some of the most certain and most serious.

Maybe. Maybe not. Some pts skate, some spend the rest of their life with
agonizing bowel problems, most fall in between, and the pt's medical
propensities and lifestyle priorities should be analyzed at great length in
advance. In particular, the pt's definition of "bad" and 'bearable" must be
analyzed in detail. Some men would rather die than risk losing their sex
life; others are more worried about the demise of Monday Night Football than
the demise of their sex life.

Let me put this gently: Hell, no, you and your husband haven't been given
proper advice if both of you can't tell US all about the primary and side
effects, likely and unlikely, of surgery, radiation and hormone treatments
before accepting any of them. Even if his treatment was being guided and
conducted personally by a team including Walsh, Scardino, Strum, Lange,
et.al. ...  until they thoroughly understand your many personal QOL
issues -- including some you guys have never even thought of yet -- they are
not qualified to dictate his treatment.

Why -- specifically, medically WHY -- is your man getting all three silver
bullets now? What is each tx and the combination of txs likely to do FOR
him? TO him? What does the specific medical and personal profile
(osteoarthritis, IBS, hemorrhoids, sex life, bone density, exercise level,
and on and on and on) of YOUR man say about the benefits and SEs he may
encounter from the menu?

Now, if my docs had spent tens of hours going over all those and many more
things with me, I'd feel secure in letting them dictate my whole treatment
regimen. AND I'D BE WRONG, IMO.  I've got a good team of oncs from all
specialties, but even after many hours of guidance including scores of heavy
questions from me, I STILL turned their collective, considered, virtually
unanimous advice on its ear -- i.e., I changed their minds -- because, TA
DA, I ACTUALLY HAVE A MIND OF MY OWN, and almost no two patients would
prioritize the list of 20-30 good and bad tx effects (and their likelihoods
IN MY BODY) the same.

Start doing some serious research, beginning in the books and websites you
see in this forum. I've got to believe only those who do that can live the
rest of their lives without second-guessing, sometimes agonizing. But while
PC is slow-moving, your man's hormonal tx and especially his radiation tx
are moving at a faster pace; the time to do more research, make more
educated choices, and even consider changing any treatments is NOW.

Asking us questions is a great first step, but we couldn't even IDENTIFY,
let alone ANSWER, all the questions and personal factors involved in
choosing treatments. Heck, we can't even agree on the interpretation of very
specific, discrete, large-population trial results or on whether 24/7
fatigue or depression or impotence are important to us; we certainly are not
qualified to tell you two how to interpret or apply facts, statistics, or
gut feel to YOUR lives. And lord knows our anecdotal experiences mean zip,
squat, nada to YOUR case.

I might add that anyone who considers this answer too long may as well just
find a good team of docs and bend over, because they CERTAINLY aren't going
to be wiling to do the lengthy research I'm strongly advising. I'm trying to
motivate Joanne to learn how to fish, not just fry up some fish sticks for
her.

I.P.

<snip>

<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.

 
-- Reader to complete...
-- Please reply to this ng as my email adress is fake:

-- Regards

-- CC

<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.

-- Reader to complete...
-- Please reply to this ng as my email adress is fake:

-- Regards

-- CC

About the external Rad, how much are they giving him?   During my 25
sessions of IMRT, I had almost no side effects.  

I had gotten to know an older fellow who was being treated at the
same time.  Our schedules matched, including the weekly debrief
with the rad doc.

About the 4th week, the rad doc asked me how things were going.  I
told him that I was having some "issues" but was hanging in there.
(I had gotten up at 3 AM to pee and that had happened, oh, 2 or 3
times in the 4th week.)

The doc seemed surprised as I had scored a near perfect on the "how
well do you pee" quiz.   He mentioned that his other patients were
"doing great".

Later I was talking to the older fellow and mentioned that I was
having side effects.  He said, "I am doing great.  I only get up 2
or 3 times a night to pee, just like before I started the IMRT."

Towards the end of my 5 weeks of IMRT, I did experience some
urgency,  I was getting up once or twice at night, on occasion.  I
had some fatigue.

Your husband's situation reminds me of a couple things the rad doc
told me.  

I was a 57 years old, T1C, PSA 10+, 5% of one core out of 12 was
Gleason (4+3)=7.

The high tech imaging located the tumor near the anterior wall.  
The rad doc said that there was a "possibility" of micro-tendrals
penetrating the capsule.  He didn't like the location, the PSA of
10+, nor the aggressive Gleason 4 albeit only in a fraction of one
core.

Given that, he distributed the seeds and expanded the external
radiation to include forward coverage outside the capsule.

When I asked him about the 7% failure rate in Rad, he told me that
surgery had a similar failure rate and his theory was that, failure
in both surgery and rad were generally due to the cancer already
escaping the capsule as micro-tendrals.  

Maybe this is what happened in your husband's case, in spite of the
report of "clear margins."

He's receiving treatment.  At his age, the rad should be "easy".

I wish him well.

Joanne,

My reaction to radiation was minimal because, in my opinion, I prepared for
it.  I walked 3-5 miles, 3-5 times a week before and during treatments.  I
drank gallons (liters) of water.  I slept an extra hour each and every
night.

I experienced minor loose bowels at some point, but I had already been
taking Metamucil for Diverticulitis.  I merely stopped taking the extra
fiber.

I experienced very slight burning when urinating in the last couple of days.

My wife said I was fatigued, but I did not notice it.