Bernie Boyce and Dawn live in London, UK. He was 59
when he was diagnosed in May 2005. His initial PSA was 19.0 ng/ml, his Gleason
Score was 3+4 = 7 and he was staged T2c. His treatment choice was Radiotherapy
& Hormone. Here is his story:
In May 2005 I was gradually finding it
harder and harder to have a decent pee so off to the General Practitioner (GP)
I went. He quizzed me about the symptoms and when I said that my father had suffered
with PC. That was it! An immediate DRE (digital rectum examination) - larger than
normal - he said and a blood test. Results of bloods came back with PSA of 19.0
ng/ml.
Saw consultant urologist three weeks later (who says that the UK
NHS gives bad service?) who gave the options (Surgery or Radiotherapy) and also
referred me to an Oncologist. Had biopsy and was diagnosed with Gleason 3+4 and
bone scan came up negative. Agreed all round that radiation would be the best
option but I needed 10-12 weeks of Hormone (ZOLADEX) first.
Started on
Zoladex and only side affects were hot flushes.
Underwent six weeks of
Radiotherapy (RT) in Sept 05 and went downhill pretty fast but NOT as a side effect
of the RT! I was suffering lots of pain when peeing and oncologist put me on pain
meds (liquid morphine), which made me extremely sick. I couldn't eat or drink
anything at all. By this time the RT had ended I was off the morphine pain meds
but still threw up anything I tried to swallow.
Over the next three weeks
GP put me on various drugs to counteract the sickness but none of them worked.
In the end they tried me on XXXXXXXX - I forget the name but it's a drug
for Chemotherapy sickness. Wonders of wonders it worked its magic. Within 24 hours
I was eating anything not screwed down. (Medicos still don't know whether it was
the pain meds or the RT that made me sick.) My weight had reduced by 60 lbs and
I was down to a very haggard 130 lbs. Took three months to recover weight and
energy but now back to tubby and happy self.
Dec 2005 follow up visit to
the oncologist which showed a Kidney problem in blood test. Turned out that I
had a "backlog" of urine from kidney to bladder as I couldn't pee properly. Emergency
admittance to hospital and had catheter inserted (heavens, that hurt) and drained
bladder. Within 24 hours bloods back to normal and I was discharged complete with
a bag strapped to my leg! No issue with the catheter at all for almost 10 weeks.
Underwent TURP in Jan 2006 (24 hours in hospital and left hospital with no Catheter)
and can now pee as good as the next guy! WARNING: Watch that you urinate enough
as I don't want anyone else to go through this.
Post RT still on Zoladex
and PSA down to 0.1 and stayed there for 8 months - Yippee!! I thought and all
was sweetness and light until July 2006 when PSA at 2.1 ng/ml. In Nov 2006 it
was up to 10 ng/ml and I had MRI and bone scan - nothing showed! In Dec 2006 PSA
up to 20 ng/ml and today ( 3 Jan 2007) I have been put on Casodex to supplement
the Zoladex. Have to wait and see what this does to the PSA. The answer will be
in a few weeks to let the additional drug hopefully "do-its-stuff". General health
is good - just usual hot flushes and tiredness due to the hormone meds - sex what's
that??
It's not been a straightforward journey but what the heck? I am
still here and doing all the things I probably shouldn't. Dawn, my wife has been
an absolute angel especially during the "sickie phase" when she tried me on all
sorts of food and juices.
Me worried? Nah, just concerned that something
is going on inside me that shouldn't be there. It's all about attitude. Got to
keep your sense of humour people.
PSA still going up and taken off Casodex in Feb '07. Saw Consultant
oncologist in March and more than likely PCA is androgen independent. More MRI,
CT and Bone scans in next couple of weeks to see if secondaries are showing up
anywhere. Seeing urologist in April and oncologist in May - "Crunch time".
Likely options; if the cancer is still only in prostate; High Intensity Focused Ultrasound
(HIFU).*
If it's started to spread then Hormone (Stilboestrol) or Chemo (Taxtotere).
Still in good health, no pain but the "beastie" is still somewhere
in my body.
Keeping my sense of humour and remember "Cancer is a word not a
sentence" Cheers to everyone who has emailed me.
Late April/early May had further MRI, Bone and CT scans and visit
to Oncologist. PSA at 132 ng/ml. Scans had identified mets in Lymph Nodes in pelvic
region and behind stomach - bone scans clear except for arthritis.
Metastasis meant HIFU not an option. Oncologist recommended Chemo
(Taxtotere) - 10 sessions at three weekly intervals. 8mg Dexamethasone steroids
twice a day for day before chemo, day of Chemo and day after Chemo.
First Chemo on 21st May. Infusion of saline drip plus anti-sickness
injection followed by infusion of Docetaxel [Taxotere] plus further saline infusion
to flush. Temp and BP taken twice through the hour on the Chemo drip. Left hospital
with gluco-corticosteroid - Prednisolone (2 x day for 30 days) and Domperidone
(anti-sickness if required).
No problems at all - felt fine throughout and all evening. Great
appetite ate like a horse. Felt queasy following morning but two Domperidone resolved
that in no time. First three days no problem but I was lousy on day four - just
felt totally under the weather. Following morning fine! Since then no problems
at all.
No serous side effects only; nasty taste in mouth and very occasional
guts ache (cross between colic and cramps). Long may the lack of side effects
continue. I feel very lucky as other I know on same Chemo have suffered!
It's some time since I updated my profile and it isn't all good
news. I completed the 10 does of Chemo in Nov 2007 and PSA had gone down from
236 to 28 EXCALLENT!.
PSA test in Jan 2008 showed PSA at 90 so off for more Bone/CT/MRI
scans.
Saw Oncologist on 14 Feb..
- Chemo definitely didn't work
- PSA up to 119 (90 in Jan and 38 in Nov) - works out at +30 points/month
- Bone Scan Clear
- CT/MRI - Mets in lymph nodes still there alive and "well".
I have been put on diethylstilbestrol/ hydrocortisone cocktail
to see if this will control PSA. Next 2 to 3 months will show if any progress.
So, Chemo doesn't work for everybody
April 2008 - PSA down to from 119 to 78
June 2008 - Initial consultation at Royal Marsden, Sutton, Surrey,
UK as candidate for Phase 3 Abiraterone Acetate Trial. PSA back up to 177 but off diethylstilbestrol/ hydrocortisone as
pre cursor to Trial
July 2008 - PSA increased to 329. Formally signed up for
the trial.
August 2008 - Completed all scans and tests prior to Trial Starting.
Await confirmation that I am accepted for the trial.
My Blog can be found at Personal
Experiences of the Phase 3 Abiraterone Acetate Trial
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What me worried? No way.
Thanks for all the mails and I hope that I have helped a few who
had questions .
Bernie's e-mail address is: bernie.boyce@blueyonder.co.uk