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Medical Forum / Diseases and Disorders / Prostate Cancer / January 2008

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New stats for Steve Kramer - not good

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limey - 15 Jan 2008 02:48 GMT
In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
Casodex in addition to the Lupron.   By mid-December, the PSA had risen
to 13.  He was taken off Casodex on December 31 and started on Dilaudid
and Decadron.  After a 5-day hospital stay, he starts radiation
tomorrow.
Signature

Dora
limey113@yahoo.com

Gourd Dancer - 15 Jan 2008 04:56 GMT
Dora, I am sorry to hear about the increase. My prayers are with you and
Henry. I forget, did he ever start a chemo regime in the fall of 2006?

Gourd Dancer

> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
> Casodex in addition to the Lupron.   By mid-December, the PSA had risen to
> 13.  He was taken off Casodex on December 31 and started on Dilaudid and
> Decadron.  After a 5-day hospital stay, he starts radiation tomorrow.
limey - 15 Jan 2008 22:48 GMT
In spite of my begging, my husband steadfastly refused to go to an
oncologist until recently (December 31).  Up to this point, he has been
fatalistic about chemo - he's 83 and keeps saying that he'd like to
enjoy the time he has left rather than chemo (IV) making him sick and
robbing him of QOL.

He had put his faith in our primary, who was the MD who (I feel) was
very neglectful and who goofed up his diagnosis in the first place.   In
turn, Henry was treated with ever-increasing painkillers, and having
ever-increasing pain, until eventually he was actually out of his head.

Dora

> Dora, I am sorry to hear about the increase. My prayers are with you
> and Henry. I forget, did he ever start a chemo regime in the fall of
[quoted text clipped - 9 lines]
>> Dora
>> limey113@yahoo.com
Alan Meyer - 16 Jan 2008 01:12 GMT
> In spite of my begging, my husband steadfastly refused to go to an
> oncologist until recently (December 31).  Up to this point, he has been
> fatalistic about chemo - he's 83 and keeps saying that he'd like to
> enjoy the time he has left rather than chemo (IV) making him sick and
> robbing him of QOL.

I didn't know Henry's age when I made my other posting.

I understand Henry's decision.  As we get older our bodies don't
heal as well as they did when we were younger and aggressive
treatments are less effective while creating more side effects
than they would for a younger man.  It may well be that, at
Henry's age, he's reached the end of the line and further
treatment is just not going to help.  It can be very hard to know
when to keep trying and when to give up.

> ... Henry was treated with ever-increasing painkillers, and
> having ever-increasing pain, until eventually he was actually
> out of his head.

I don't really know much about cancer pain.  My own cancer was
treated at an early stage and I haven't experienced the terrible
pain that cancer patients often feel.  However I have read that
there are at least three very different kinds of cancer pain that
require different kinds of treatment.  I have also read that a
good cancer pain specialist can make all the difference in the
world in pain management.

I remember that one of my uncles died of cancer about 30 years
ago.  He was in great pain and getting little help from drugs
when my aunt found a hospice where they specialized in pain
management.  She claimed that they helped him a great deal.

All doctors know something about pain management, but very few of
them specialize in it and really understand all the options.  If
Henry's doctor can refer him to a real cancer pain specialist, he
might be able to make a difference.

I see that you are near Annapolis.  If your doctor doesn't know
anyone you might want to contact Johns Hopkins or the University
of Maryland Medical Center oncology departments to see if they
can recommend someone.

This is such a hard time of life.  I hope that, in the midst of
pain and loss, you will still be able to enjoy a few good days
and good memories together and with the rest of your family.

   Alan
limey - 16 Jan 2008 02:14 GMT
> I see that you are near Annapolis.  If your doctor doesn't know
> anyone you might want to contact Johns Hopkins or the University
> of Maryland Medical Center oncology departments to see if they
> can recommend someone.

Fortunately, within the last year or so, Anne Arundel Medical Center has
become affiliated with Johns Hopkins, so I hope that means the two
facilities will exchange information as well as physicians.   I do know
the oncology group Henry's now going to has Hopkins-trained and Harvard
MDs within the group.

The only thing I personally am so relieved about is that he is now in
the hands of an oncologist, rather than just our primary doctor.

Dora

> This is such a hard time of life.  I hope that, in the midst of
> pain and loss, you will still be able to enjoy a few good days
> and good memories together and with the rest of your family.
>
>    Alan
El Woody - 18 Jan 2008 21:06 GMT
> > I see that you are near Annapolis.  If your doctor doesn't know
> > anyone you might want to contact Johns Hopkins or the University
[quoted text clipped - 19 lines]
>
> - Show quoted text -

Dora - Are you on the eastern shore? My folks make the same complaints
about their primary and knowing that Anne Arundel has high quality
MD's will ease my mind about their care. Thanks for posting!
Dora - 19 Jan 2008 15:36 GMT
> Dora - Are you on the eastern shore? My folks make the same complaints
> about their primary and knowing that Anne Arundel has high quality
> MD's will ease my mind about their care. Thanks for posting!

Yes, I'm on the eastern shore.   High quality primaries seem to be in
the minority, I'm afraid.  Our primary really blew this one.

I'm pretty critical of doctor/hospital care, but I can't speak too
highly of the treatment Henry received and the quality of the
specialists and nursing staff affiliated with Anne Arundel Medical
Center.   Also, I had not realized how up-to-the-minute the Cancer
Institute was.  He's now in rehab, getting a series of ten radiation
treatments to relieve some of the pain.   If only I could have talked
him into this earlier, but he's stubborn.  :-(

Dora
Steve Kramer - 15 Jan 2008 09:34 GMT
> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
> Casodex in addition to the Lupron.   By mid-December, the PSA had risen to
> 13.  He was taken off Casodex on December 31 and started on Dilaudid and
> Decadron.  After a 5-day hospital stay, he starts radiation tomorrow.

I am so sorry, Limey.  Where is he to receive radiation, assuming it's
palliative.  I don't recall seeing the use of Decadron before.  Is that just
something to counteract the side effects of Dilaudid?

I'll keep him and you in my prayers.
limey - 15 Jan 2008 23:06 GMT
>> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
>> Casodex in addition to the Lupron.   By mid-December, the PSA had
[quoted text clipped - 8 lines]
>
> I'll keep him and you in my prayers.

He will receive the radiation at the Cancer Center at Anne Arundel
Medical Center in Annapolis, MD.   Right now, he's in a rehab facility
after being discharged after five days in the hospital.   At my request,
they will evaluate him and let me know what kind of care he'll need once
he returns home.

It has been a scary time, since he was out of his head and I was unable
to control him at home.

You asked about the Decadron.  No, it's not to counteract the Dilaudid.
Right now, I'm mystified, too, so I'll try and sort this out for myself.
When Henry saw the onco on 12/31 and the PSA was found to have risen so
much, he was taken off Casodex because the onco said that sometimes that
would help the PSA to drop.

At that time he was put on the Dilaudid for pain, and the Decadron in
order to see if that would determine whether it was a nerve pain or
whether it was a tumour itself pressing on the spine.   Unfortunately,
it had some bad side effects - the breathing difficulties were caused by
pulmonary embolisms (in turn, caused by the Decadron).  He now has to
have shots twice a day for that - for how long, I don't know.  To my
amazement, they are treating the embolisms but have him once more on
Decadron.  (??)   He also couldn't swallow, so that had to be treated as
well.

I've answered others who responded to my post, if you are able to take
the time to read them.   I appreciate your prayers, as well as those of
others, so a lot of them are being sent "upstairs" right now!

One bright note (if you can imagine the feeling) - I had to have a
PET/CT scan myself on Friday because they thought my cancer might have
returned.  Negative, negative, negative!!

Sorry this is so long.

Dora
Steve Kramer - 16 Jan 2008 01:04 GMT
> One bright note (if you can imagine the feeling) - I had to have a PET/CT
> scan myself on Friday because they thought my cancer might have returned.
> Negative, negative, negative!!
>
> Sorry this is so long.

Glad to hear at least you're doing well.

No need to apologize for length.  You know that.
Gourd Dancer - 17 Jan 2008 03:47 GMT
I took Dec for nausea with chemo initially, but then changed to Zofran -
worked much better. Decadron is also used to stimulate eating for some
cancer patients.

Gourd Dancer

>> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
>> Casodex in addition to the Lupron.   By mid-December, the PSA had risen
[quoted text clipped - 6 lines]
>
> I'll keep him and you in my prayers.
kh - 15 Jan 2008 13:12 GMT
> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
> Casodex in addition to the Lupron.   By mid-December, the PSA had risen
> to 13.  He was taken off Casodex on December 31 and started on Dilaudid
> and Decadron.  After a 5-day hospital stay, he starts radiation
> tomorrow.

Dora,

I've got a similar pattern but other than the numbers, am feeling
pretty good.

Here's some news, I don't know how effective Provenge is, I don't
think that anyone does but
it shows that there are new treatments in the pipeline.

Quote follows.

SEATTLE, Jan. 15 /PRNewswire-FirstCall/ -- Dendreon Corporation
(Nasdaq: DNDN - News) today announced that the company has been
granted a broad European patent covering the company's lead product
candidate PROVENGE® (sipuleucel-T), the Company's investigational
active cellular immunotherapy for the treatment of advanced prostate
cancer. European patent No. 0 870 022 B1 covers the composition of
matter of PROVENGE as well as the company's other active cellular
immunotherapy (ACI) product candidates, such as NEUVENGE(TM)
(lapuleucel-T), which utilize Dendreon's Antigen Delivery Cassette(TM)
technology. The patent also covers methods of activating antigen
presenting cells in vitro with certain fusion proteins developed by
Dendreon, including the fusion protein that is used in PROVENGE.

"The approval of this broad patent covering PROVENGE and our other
active cellular immunotherapies in Europe is an important milestone
for the company," stated Mitchell H. Gold, M.D., president and chief
executive officer of Dendreon. "While our priority is to obtain the
approval of PROVENGE in the United States, the issuance of this key
patent solidifies the commercial potential of PROVENGE and our ACI
platform on a more international basis. Prostate cancer is a global
unmet need with, according to Cancer Research UK, approximately
670,000 men diagnosed with the disease each year, and we believe that
PROVENGE could have a worldwide impact on the treatment of prostate

-kh  hang in there!!!!
limey - 15 Jan 2008 23:09 GMT
>> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
>> Casodex in addition to the Lupron.   By mid-December, the PSA had
[quoted text clipped - 12 lines]
>
> Quote follows.

               <information clipped and saved>

Let's cross our fingers and hope!
Yes, we're hanging in there like mad.  Many thanks for all the
information.

Dora
Alan Meyer - 15 Jan 2008 19:40 GMT
> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
> Casodex in addition to the Lupron.   By mid-December, the PSA had risen
[quoted text clipped - 4 lines]
> Dora
> limey...@yahoo.com

Dora,

I'm very sorry to hear of Henry's condition.

I'm not any kind of an expert, but I'd like to recommend that you and
Henry look into some additional treatments.

One thing to consider is "second line" hormone therapy.  Has Henry's
oncologist looked at that?  Has Henry already had it?  The drugs
typically used for this are ketoconazole and estradiol.  There are
also others.  These drugs are not well tolerated by everyone and don't
work for everyone.  But some men get an extra amount of time from
them.  I seem to recall that some men have gotten as much as two years
of low PSA from second line hormone therapy, but I'm not sure of
that.  Men who have "failed" first line hormone therapy with Lupron
and Casodex may still benefit from "second line" therapy.

Another drug that is sometimes used is docetaxel.  It is a
chemotherapy drug approved for prostate cancer, not a hormone therapy
drug.  It used to be used only at a late stage in advanced cancer, but
I think it's now being used at earlier times on the theory that if you
hit the cancer with it while it is small you can get longer benefit
than if you wait until it has grown.

Yet another thing to consider is clinical trials of new, experimental
treatments.  Henry is still healthy, which makes him a good candidate
for some trials.

I don't want to get any hopes up about clinical trials.  Experimental
treatments are, after all, experimental.  Most of them don't work out
and many that do provide only limited benefit or only to some
patients.  But they might be worth looking into.

There are two websites that can be used in the U.S. to find clinical
trials:

  http://www.cancer.gov/clinicaltrials/search
  http://clinicaltrials.gov

They should show the same set of trials but have different search
options.  Clinicaltrials.gov is simpler to search.  Cancer.gov gives
more sophisticated options.

Entering a trial is something that could be discussed with Henry's
oncologist.  The oncologist may be able to give advice about whether
this is a good idea, assist in finding something appropriate and, in
some cases, might be able to facilitate entry into the trial by
submitting test results.

Best of luck to you.

   Alan
limey - 15 Jan 2008 22:42 GMT
>> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
>> Casodex in addition to the Lupron.   By mid-December, the PSA had
[quoted text clipped - 57 lines]
>
>    Alan

Thank you, Alan.  I have taken your very comprehensive comments under
advisement;  it looks as though a long discussion with the oncologist is
in order.   I really appreciate the time you took and will make good use
of your remarks.

Dora
callalily - 17 Jan 2008 02:23 GMT
> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on
> Casodex in addition to the Lupron.   By mid-December, the PSA had risen
[quoted text clipped - 4 lines]
> Dora
> limey...@yahoo.com

Dear Dora,

I can't give you better advice than you've already received.  Henry is
in good hands.  I might add that he shouldn't be pressured into doing
anything he doesn't want to do.  I wish you both well and am keeping
you in my thoughts.

I would like to append a famous poem, which is also one of my
favorites.  It reminds me of you, Dora, and all the other good women
in this sisterhood who love and care for their men well into old age,
often when they themselves are ill.  These are the wives who are
willing to accompany their husbands on the journey of life, *wherever*
it will lead them.   They are the "pilgrim souls" referred to in this
poem.  The poet declares his eternal and unconditional love for his
wife, and even adds that, as they age together, she only becomes more
beautiful in his eyes. And to make sure the wife doesn't forget any of
this, he has memorialized his sentiments in a book, which the wife can
take down and read whenever she likes.

[Note: This is just MY interpretation.  Also, please don't get hung up
on details, like the fact that the man is speaking from the "great
beyond".  It's the feelings that are important, not the timeline.]
------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

WHEN YOU ARE OLD

-- by W.B. Yeats.

When you are old and grey and full of sleep,
And nodding by the fire, take down this book,
And slowly read, and dream of the soft look
Your eyes had once, and of their shadows deep;

How many loved your moments of glad grace,
And loved your beauty with love false or true,
But one man loved the pilgrim soul in you,
And loved the sorrows of your changing face;

And bending down beside the glowing bars,
Murmur, a little sadly, how Love fled
And paced upon the mountains overhead
And hid his face amid a crowd of stars.

Take good care.

Leah
 
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