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 EXCELLENT!
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.
George Hardy mailed me to say that his good friend Bernie died at home in London on Monday night,19th Jan. Although he was on an Abiraterone trial, he was given the placebo. He was told just 2 weeks earlier that there was nothing more could be done for him.
I have never understood why it is essential for patients on a clinical trial to be given a placebo. Why?? Maybe Bernie could have lived a little longer if he had 'won the toss'. Seems so darned unneccessary to me.
[NOTE: Another option for salvage therapy is Cryotherapy - see: Treatment Choices]
