Greetings !!!!
My humble obeisance request is since this post may be quite lengthy so
please spare your time & help out. Now my Father quality of life is
disturbed enormously and I really need to do something at the
earliest.
Dec'02: -- Got severe pain in the back. In MRI scan they found out
prostate cancer and he is afflicted by severe pain. Doctor (Urologist)
suggested us for Orchiectomy. Both testicles are removed on 12/2002.
+++++++++++++++++++++++++
Jan'03: -- Urologist advised to take pills (Calutide i.e is
Bicalutamide daily 1@morning )
+++++++++++++++++++++++++
Jun'03: -- Again afflicted by severe pain. From scanned report Doctor
found out cancer spread to pelvis area & he insisted us to go for
radiation. Radiation carried out for 15 sittings [Above the buttock
area]
+++++++++++++++++++++++++
Jul'03: For second opinion I've been to Oncologist, after go through
my Father case he suggested "Lupron Depo 3.75mg" for 6 months (From
Aug'03 to Jan'04)
PSA chart
mm/yyyy PSA score Reference range
08/2003 1.2 0.0 to 4.0
09/2003 1.4 0.0 to 4.0
10/2003 0.6 0.0 to 4.0
11/2003 1.1 0.0 to 4.0
12/2003 2.6 0.0 to 4.0
01/2004 6.6 0.0 to 4.0
02/2004 11.3 0.0 to 4.0 (Latest PSA)
+++++++++++++++++++++++++
Feb'04: - He got severe pain in both the legs below the knees. From CT
& MRI scan they found the cancer spreads to some other areas.
CTSCAN : Pelvis : LYTIC LESION INVOLVING L5 VERTEBRRAL BODY AND RIGHT
ILIAC BONE FEATURES SUGGESTIVE OF METASTATIC DEPOSIT
MRI: CERVICAL AND DORSAL SPINE METSTATIC AT D10 LEVELWITHIN THE
VERTEBRAL BODY THERE IS NO CORTICAL EROSION, INTRANSPINAL EXTENSION
OR PARAVERTEBRAL SOFT TISSUE INVOLVEMENT THE REST OF FINDINGS ARE
NORMAL
TREATMENT GIVEN FOR THE ABOVE PROBLEMS/REPORTS
1. Ext RT : to the :3-L5 , Illiac bone 3300cGy/300cGy/11 # (From
03/03/04 to 17/03/04)
2. Ext RT : to the D9-D12 3000cGy/300cGy/10# From 14/04/04 to
27/04/04
+++++++++++++++++++++++++
May'04: - After the Nuclear bone study,MRI of LUMBAR SPINE test they
found out its nerve compression, which causes the pain. During this
period we were used to give some pain killer injection or tablet. But
most of the times it won't help much.
Onco (RT) referred us to Neurosurgeon for this problem. I expected
that he can go for some treatments, which help out for my Father, but
unfortunately he didn't take my Father case and he give a letter back
to oncologist & here it is
Neurosurgeon letter to Oncologist (RT)
He has clinical features of cauda equina syndrome causing bilateral
foot weakness, most prominent in the right foot dorsiflexor. In
addition he had root pain predominantly on the left side. The clinical
and imaging finding suggest root compression due to multiple
metastases but especially at L4-5 level. The disc bulge is because of
the collapse of the body. It is not like the usual case of disc
prolapse. Since the lesions are multiple, they are not amenable to
surgery. Please continue appropriate hormonal chemotherapy along with
analgesics and bed rest.
Now we all are totally weak and don't know what to do after the
neurosurgeon reply. Please advice me how to proceed in order to give
him a better quality of life.
My primary concern is how to get rid of the pain (nerve compression) ?
For the past 10days he got some other problem in the urination also,
he is badly suffering from burning feelings in the tip while the time
of urination and the color of the urine also looks light green. During
night times he is passing more urination. I don't know whether it is
because of the Cauda equina syndrome or the chemotherapy.
Right now he is taking the following things
1. Calutide that is Bicalutamide- Daily Morning 1 Tablet
2. Honvan (Chemo tablet) 2 tablets @night
3. Tablets and tonic for urination infection and for the pain/burning
feelings
4. Once in a month zoldonet injection (3months over)
Since they said its Cauda equina syndrome, does anyone of you heard
about prostate cancer with this Cauda equina syndrome problem? Please
check with your friends/colleagues and kindly advise how I proceed
further. If possible let me know how in US they will give treatment
for this kind of patients (Advanced Ca Prostate with Cauda equina
syndrome)
Frankly speaking I don't know what to do & my life is paining if I
heard the pain news and the way he is suffering from this disease. I
am speechless to express my feelings. Please consider this as an
urgent case and help out at your best. I am ready to talk to any of
you if you want me to talk to you and give further inputs. Right now I
am in Singapore & my parents in India. If possible you please check
with US Doctors about this case or kindly help him to get rid of the
pain and give good Quality of life.
If you know any clinical trials, which is available globally kindly,
let me know. I will closely check with my Doctor and check for the
feasibility. If anyone of you or your friends/relatives affected from
the same kind of disease please let me know how you giving treatment
with the tablets/injections names. We will check whether the same
treatment or the injection/tablets available in India.
If you need any report please reply to this post or grpdocs@yahoo.com
i will post it immdly..
Thanks a lot !!!!
Best Regards
Prasath.
Steve Kramer - 26 May 2004 17:33 GMT
Prasath,
It is with a heavy heart and uncomfortable memories that I feel compelled to
tell you that there is very little they can do for your father other than
pain management. My uncomfortable memories are from watching my father go
through similar problems with no remedy remaining other than to put him in
bed and give him so much Morphine that he did not know what was going on
half the time.
I believe they can find what is causing the burning during urination and
maybe relieve it. Otherwise, they cannot operate on his disk(s), they
probably cannot radiate him any more, hormone treatments are not working and
were probaby ill-advised from the onset considering there were already no
testicles, and current pain medication is not working.
If it were my father (and 21 years and 11 months ago it was my father), when
the pain gets so bad that he cannot stand it, he needs to climb into bed,
get a catheter, get some very strong pain medication, and understand that he
is never going to get up again. I do not know of your beliefs in India
regarding what happens to a man or his spirit or his soul after death, but
he is needs to prepare himself for that while he is lucid.
It is just an awful thing for a loving son to live through. Almost 22 years
later, I cannot get the vision out of my mind. But, you have no more
choices left to you. And, on some day, 22 years from now, you will have a
tear in your eye thinking about it, as I do every year on June 28.

Signature
Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA .07 .05
Lupron 7/03, 8/03, 12/03, 4/04
> Greetings !!!!
>
[quoted text clipped - 120 lines]
> Best Regards
> Prasath.
C. Paul Williams, MD - 26 May 2004 22:44 GMT
> Since they said its Cauda equina syndrome, does anyone of you heard
> about prostate cancer with this Cauda equina syndrome problem?
The cauda equina is the "horse tail" of spinal nerves that exist below
the bottom of the spinal cord, which ends at about T11-L2. It is the
continuation of the spinal nerves below this level. Cauda equina is
an anatomic term. Cauda equina syndrome is any condition (not just
prostate cancer) that causes compression and dysfunction of these
nerves. From the description of the MRI, it sounds as though his
prostate metastasis has caused a mass which is producing just such
compression. The treatment usually involves radiation (which he has
already had) or surgical decompression of the mass and the nerves.
That said, your father's situation is dire and there is no therapy
which is going to cure him or significantly extend his life span, by
your description. It may be time to concentrate on pain
control....Sorry.
Good luck. CPW
Grp - 27 May 2004 03:09 GMT
> > Since they said its Cauda equina syndrome, does anyone of you heard
> > about prostate cancer with this Cauda equina syndrome problem?
[quoted text clipped - 13 lines]
> control....Sorry.
> Good luck. CPW
Thanks Mr.Steve & Mr.Paul Williams,
I understand the criticality now & i think its very hard to get
treatment for this situation with his existing health condition.
As you said i need to concentrate on pain. Here we tried most pain
killers which is helping for few hours or may be maximum of 1 or 2
days. What kind of pain killers you are using for this kind of case i
will check the equivalence pills/injections in India through my
Doctors.
The worst thing is over this he got the urination problem
also.Consistently the urine color is light green with burning
tempation while passing urine. Urologist gave some tablets and tonic
for this infection & he told its takes time to back to normal.I hope
god only can help me out :( dont know what to type more....
Thanks again for your replies...
Regards
Prasath.
Beverley - 27 May 2004 15:24 GMT
Today most patients here in the USA who are in the final phase of terminal
illness receive "patches" of morphine. The patches are sticky squares that
adhere to the skin and supply a continuous dose of morphine to the patient.
Oxygen is also often used to make it more comfortable for the patient to
breathe.
I am so sorry to hear about your father. It is very hard to face the death
of a parent or any family member. Being so far way must make it even more
difficult.
Please make sure any sons or brothers in the family have routine PSA test
and DRE (digital rectal exam) for early detection of prostate cancer. PC
tends to run in families and the earlier it is detected the greater the
chance of killing or removing it so it does not threaten the life of another
family member.
Bev
> > > Since they said its Cauda equina syndrome, does anyone of you heard
> > > about prostate cancer with this Cauda equina syndrome problem?
[quoted text clipped - 34 lines]
> Regards
> Prasath.
J - 28 May 2004 11:25 GMT
> > > Since they said its Cauda equina syndrome, does anyone of you heard
> > > about prostate cancer with this Cauda equina syndrome problem?
[quoted text clipped - 34 lines]
> Regards
> Prasath.
Hello Prasath,
I'm sorry to hear about your father.
I'm unclear what the green urine is caused by. Is there other organ involvement?
Since you're in Singapore and your parents are in India, you may want to talk to his doctors about what time left he
has (prognosis) and decide whether you want to go now and near the end (or just one or the other).
Above all, he needs good pain management. I don't know if there's Hospice in India or palliative care nurses/nursing.
In North America, UK and Australia (and other countries) they provide end of life care and support to family members.
There's often a fee, unless insurance covers it. Sometimes it can be done in the home, sometimes actually has to be in
a Hospice building.
I don't normally post on this newsgroup (but do read). We have a palliative care expert on alt.support.cancer so I'm
crossposting this. Watch for replies from either newsgroup or please feel free to come over to alt.support.cancer
where we discuss end of life issues.
On alt.support.cancer we can provide ongoing support and possibly helpful information to you, as your father's cancer
progresses. Since there are others here who'se loved ones have passed away from prostate cancer, they may also be of
ongoing help to you. So I'll leave it up to you whether you want to crosspost your posts or just post to one or the
other newsgroup.
J - alt.support.cancer
J - 28 May 2004 11:26 GMT
I forgot to crosspost !
> > > > Since they said its Cauda equina syndrome, does anyone of you heard
> > > > about prostate cancer with this Cauda equina syndrome problem?
[quoted text clipped - 57 lines]
> other newsgroup.
> J - alt.support.cancer
J - 28 May 2004 11:25 GMT
> > Since they said its Cauda equina syndrome, does anyone of you heard
> > about prostate cancer with this Cauda equina syndrome problem?
[quoted text clipped - 13 lines]
> control....Sorry.
> Good luck. CPW
Would Neurontin help (the pain) ?
This is a question for you and/or our palliative care expert on
alt.support.cancer.
Please note the crosspost
J - alt.support.cancer
Mike Radcliffe - 31 May 2004 04:06 GMT
> > > Since they said its Cauda equina syndrome, does anyone of you heard
> > > about prostate cancer with this Cauda equina syndrome problem?
[quoted text clipped - 19 lines]
> Please note the crosspost
> J - alt.support.cancer
Neurontin (gabapentin) and other anti-epileptic drugs Dilantin and Epilim as
well as tricyclic anti-depressants are often very effective in neuropathic
(nerve) pain.
In some people a nerve blockade can be effective but this carries with it
the possibility of loss of sensation and power depending on the site or
level in the spine that it is used.
MIKE
J - 01 Jun 2004 11:08 GMT
> Grp wrote:
> > > > Since they said its Cauda equina syndrome, does anyone of you heard
[quoted text clipped - 20 lines]
> level in the spine that it is used.
> MIKE
Thank you Mike.
I'm not sure that other cancer newsgroups know what a gem we have with you here
to read and reply to posts (or crossposts).
To other newsgroups, use the crossposting feature (in your newsreader) when you
have a question or situation where Mike (our palliative care expert) might be of
assist.
Use him, we have his wife's permission.
J- alt.support.cancer
John Loomis - 27 May 2004 01:57 GMT
I have read all the reports, and agree. Love your father, help him with
pain, and apparently the cancer has spread.....
that is the best a person can do except wait for a miricle...
Those do happen.
so I pray for a miricle.
I hope your father recovers well, and is pain free.
I will have your fathers pain and suffering in my mind, and hopefully he
feels better.
John Loomis
Wish you the best!
> Greetings !!!!
>
[quoted text clipped - 120 lines]
> Best Regards
> Prasath.