Derek
Bird and his wife Iona live in Port Elizabeth, South Africa. Derek came across
our Yana website during a visit to Australia and has sent us his story, which
we are very grateful to have. He continues...My
age at diagnosis was 68; I am presently 73. I was diagnosed in December
1996 with a PSA at diagnosis of 145; Gleason grade of 7 Staging: T4. The
Treatment I commenced was radiotherapy, followed by hormone therapy.
During April 1993 I had an open Turp for an enlarged prostate. A biopsy of the
gland revealed no cancer.
During
June 1996 I started passing blood in the urine. A cystoscopy revealed polyps on
the bladder wall which the urologist cauterized. While this operation stopped
the bleeding, the same problem occurred six months later. Another cystoscopy/
cauterization was performed and for the first time a PSA, which then read 145.
A biopsy followed and this revealed prostate cancer.
What
a traumatic period in my life! For five (5) days I was so ill that I thought I
was going to die. Thank God for my Psychologist daughter who counselled and helped
me over this period. The Urologist at the time recommended radiotherapy.
In
January 1997 I attended a hospital's oncology department for treatment plus a
course of Androcur every two weeks. At the end of the treatment my PSA had dropped
to 11.9 - I had never really come to terms with the fact that I had P.C. until
the day when my wife came across a short article in one of the "Quality of Life"
magazines relating the experiences of Michael Korda as set out in his book "Man
to Man, Surviving Prostate Cancer".
After
reading his book I decided to make an in-depth study of the disease and found
that it was not as frightening as I, in my ignorance, had thought. In addition
to all the information given to me by my NEW Urologist, I started my own library,
mainly information extracted from the internet. Now, I don't profess to be an
expert on the subject of PC, but I wish I knew back in 1996 what I know now.
Undoubtedly
my cancer problem has played a major part in the changed way of life of my wife
and myself. I've been on hormone therapy following the 33 sessions of radiotherapy
in 1997.
At
present my PSA is 0.5 - sure, loss of libido and sex is now a way of life - but,
hell, it's not the end of the world - thank God I have a loving and understanding
wife. Apart from the impotence aspect I still do the things I did before - gardening,
golf, etc. I even undertook the 'Race to Rio' Yacht Race last year (January 2000)
as navigator on my son's 40ft catamaran. At 72 years of age I was the oldest "sailor"
amongst the 80-odd yachts that competed (we came 1st in our Class, after 26 days
at sea across the Atlantic ).
Over the years I have come to realise that there are so many men out there who
are as ignorant about BPH and PC [Prostate Cancer] as I was. Like, in Michael
Korda's book, a PC Support Group was needed in my home-town to educate and make
men aware of the disease. In February last year my wife and I visited our daughter
in Sydney, Australia. During our stay and quite by chance (I prefer to call it
fate) I happened to come across a prostate cancer office in Lane Cove, a suburb
of Sydney. The people I met there very kindly provided me with information about
support groups in and around Sydney. In addition I was given excellent tapes and
literature on the subject of P.C. as well as dates of support group meetings.
During
my stay I attended quite a few of the meetings and was so inspired that I resolved
to pursue the start-up of a P.C. Support group in my home-town , Port Elizabeth.
In collaboration with the local Cancer Association, the inaugural meeting of the
Port Elizabeth Prostate Cancer Support Group was held in the training room of
St George's Hospital in July 2000. The Group meets on the last Monday of every
month and to date we have 65 registered members. Guest speakers from the medical
and associated professions are only too willing to give of their time to do presentations
at our meetings.
[Update
23 April 2002] Certain
things have changed since we last communicated....I now have a rising PSA...from
0.5 to 2.0 ng/ml which resulted over a period of one year ending March 2002. OK,
so a PSA of 2.0 isn't a train smash....however, any rising PSA, in my book, is
suspicious. So, I thought , why not nip it in the bud and find out what's going
on.
In
discussion with my Urologist on this, he agreed to "throw the book at me". So,
in March, I had a bone and CT scans done, as well as a biopsy.The bone and CT
scan results were negative but the biopsy was still positive with a GG of 8. My
Uro maintains the cancer is-confined (at the moment) and at a "B something" stage.
I am still on CAB.(Zoladex and Casodex).
I think it's time for another opinion......so I've made arrangements to see the
Oncologist who handled my EBRT way back in 1997....Surely there is something that
can be done to contain my rising PSA....a change of medication, maybe? who knows.
Any other suggestions will be welcome.
(Update
12 Feb 2004) Although my PSA is still on the high side, I feel fine (no aches
and pain) At 76 years of age, I did another Atlantic crossing last September/October,
this time to the Caribbean Islands and then spent Xmas and New year with my family
in Sydney, Australia.
I
am still on CHT (Combined Hormone Therapy)i.e. Zoladex and a second-line antiandrogen
viz, Aminoglutethimide + Hydrocortisone which I started in July 2003. My latest
PSA reading is 8.2 ng/ml, down from 10.7 on the 1st December last year.
While
I am very grateful for the drop in PSA, I am not altogether enthused about this
Amino treatment. Is there anybody out there on this treatment? If so, I WILL BE
VERY PLEASED TO HEAR FROM YOU. I will be seeing my oncologist again this week
and I forsee that he will advise remaining on this TX for a few more months.
Derek
has recently suffered a minor stroke and will not be able to respond to any correspondence
for the present.
Derek
is now 77, he has done well after his stroke and is back on the air. Here is his
update:
A
year ago I said my PSA was still on the high side. I am still on CHT. I had a
Orchiectomy in Oct 2004. In November, my oncologist and I decided to try another
second line anti- androgen, LDH+HC (Low dose Ketocanazole +hydrocortizone)as the
Aminoglutethemide (AG)was not working for me anymore. (rising PSA)
I
take 600mg of LDK per day. It did bring down my PSA after 3 months to 13.7 and
seems now to be hovering around the 15 to 16 number. In a telephone discussion
with my onco today, I suggested we double up on the meds ie 1200mg per day, but
he advised not to as there was no PSADT to speak of and although the PSA was on
the high side, as least it seems to remain steady around 15ng/ml.
The
Keto plays havoc with my liver so I take "Legalon" tablets to ease the pain. Regular
LFT blood tests are important. I can handle the PCa, no problem.....it's the Stroke
I had a year ago that I cannot come to terms with.
I'll
be happy to respond to anyone who would like to correspond with me.
I've
not had any real improvement in reduction of PSA, it still hovers around the 10
to 14 mark. The last time I spoke to my Onco he said to try "withdrawal".....
"go off all meds for a month", which I did for 2 weeks. But just to have a look
see, I had a PSA and what do you know it went up 2 points from 12.2 to 14.3. (in
just 2 weeks) Funny thing, on my own, I tried the similar lay-off for a week last
year when I went to see my son in Cape Town and my PSA came down to 7 almost 50%.
The
trouble of course and like my wife always tells me, is that I read too much on
the lists how others have gotten their PSA's down to 2 decimal places from some
figure way out, and here I am with no pain, no large tumours, no mets but dissatisfied
with 12 to 14 ng/mL So am back on LDK+HC and a.1mg Estradiol patch changed twice
a week, which has for the last 18months kept my PSA where it is. Don't want to
try DES or patches full time because of my recent stroke, and I don't think I'm
a candidate for Chemo just yet. To top it all, my oncologist with whom I had a
good rapport, is leaving Port Elizabeth, so I don't know....... what's left medically
speaking is'nt the best.
The
Low dose Keto worked for five months last year but then the old PSA started rising
again. My Oncologist suggested we try Androcur injections.......after a few months,
that failed. At my suggestion, we tried ADT3 (150 mg Casodex and Avodart, Orchiectomy
same as LHRH) but another five months later the PSA had risen to 27.3 ng/ml. So
now what.......(oh for a medical oncologist who specializes in PCa)!! I've tried
all the local treatments except DES (not available in this country) Patches, and
Chemo. So it's off to the Oncologist once again. This time I insist we go the
Chemo route i.e. LD Taxotere, once a week, rest 1 week. He talks me out of Taxotere
and suggests we first try Estramustine (Emcyt) a chemo tablet, 1 tab twice daily.
What can I do, so it's away with ADT3 and start Emcyt in Feb 2007.
Well
at least we got a drop in PSA to 15.8 ng/ml at the end of May '07. Next test in
July, hopefully it will keep dropping. One thing though, from what I've read-up
on this medication, I should be taking 3 tabs twice daily.......but oh boy, even
with 1 tab twice daily, the side effects are most unpleasant, mainly constipation,
ankle swelling, skin sores and fatigue. On my last visit to my Onco, I mentioned
that in May I had taken a 2 week "holiday" from the tab and since it did not effect
the PSA result, I am now going to apply taking this medication on a 6 weeks on
and 2 weeks off basis. What did he say? What can he say; It's my body........
Regrettably
my PSA rose to 20.4 in August 2007 with another rise to 28.9 in December 2007.
In February 2008 the PSA doubled again to 55.6.
We
immediately stopped the Emcyt and started single agent Chemotherapy, Taxotere
at 40mg with the usual pre-meds the day before chemo, on the day, and day after.
However, after 6 infusions, (2cycles) the PSA was 60.5
Now
the Onco suggested increasing the chemo to 60mg for the next infusion, which I
flatly refused and I suggested a change of chemo protocol as the Taxotere was
not working. He suggested single agent Navelbine 50mg with 40 mg HC per day. The
PSA doubling in Feb this year after all the treatment, is of major concern to
me.....and of course the fact that after 6 infusions of Taxotere, the chemo is
not working. Also the PSA is now at 100.4 after 2 sessions of Navelbine!!!
After
the 6th infusion of chemo I spoke to my onco about combining the taking of Taxotere
with Emcyt. He was not in favour. I also suggested that we try a combination with
the Navelbine. He also disagreed
Unfortunately,
we do not have a "medical oncologist specializing in Prostate Cancer" in the city
of Port Elizabeth where I live. In fact, I am not aware of a PCa specialist in
any part of the Republic of South Africa, so we have to be satisfied with a "general"
oncologist. So far I am free of any pain (no mets) thank God.
Derek's
e-mail address is: dbird@telkomsa.net
