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Still hanging in there


Kezza2

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Reading other members stories has brought me a degree of comfort, so I decided it was time for me to add my story.  I went to my GP in June 2001 for a quick check-up, having turned 50 the previous year.  Everything looked fine, and he said I will do your bloods just in case.  I had seen a show with John Clark and Brian Dawe on prostate cancer so said to my GP," add that prostate test to the blood tests" to which he replied that I was too young, but reluctantly agreed to shut me up.  I had the blood tests and received an urgent call from my GP's reception requesting I visit him, where he informed me I was in perfect health except for one little thing, and he needed me to have another blood test.  The second test confirmed a PSA of 24, so he sent me off to a urologist, where two weeks later my PSA had gone to 32.  There followed a TRUS, which confirmed prostate cancer in 12 out of 12 samples, and a Gleeson score of 9.

 

Remember this was 2001, so there was no brachytherapy, no robot assisted surgery, so my options were really non-existent.  We commenced Lucrin Depot and brought the PSA down to 5 before starting daily external beam radiation on 21st January 2002.  I was told surgery was not an option.  Six weeks later and a lot sorer it was all over, or so I thought.  We continued Lucrin for another six months and PSA was down to 0.01, so "Yahoo, I'm cured " I thought and went back to my normal life with regular trips to the urologist and blood tests confirming all was well.  I also changed urologist about this time, and without going into details, I am a firm believer that you have got to have complete faith in your medical team, hence the change in urologist.

 

Fast forward to 2006 and I visit my GP for a check-up as a 55 year old, and he says he wants me to have a colonoscopy.  So I go along to the hospital for this colonoscopy, and the let me out a week later minus a foot of bowel - seems I had a tumor the size of an orange.  Well, a course of chemo later and "Yahoo, I'm cured - again " At this stage, and after discussing it with my urologist, we decided to make my medical oncologist my primary specialist for my prostate.  Everything is going along perfectly, visits to the oncologist every 12 weeks, bloods are good except the PSA is rising, so back on to Lucrin for a while and it drops, and we repeat this several times until in 2014 the Lucrin doesn't drop the PSA any more, so we add Cosedex to the medication and it pulls the PSA down from 10 to 7.2 and then to 3.4, but 12 weeks later it is 3.6.  A PSMA PET scan using Gallium confirms a lymph the size of a walnut, another the size of a macadamia, both with extreme take-up, and bone mets on T3 vertabrae, scapula, manubium and sixth rib.

 

At this stage I hear about the Argan trial, and am recommended by my oncologist.  I go in for my final screening CT, bone scan, and bloods this Friday 19th Feb 2016, so hopefully by March I will be at least receiving aberiterone and with any luck the Agran trial drug as well.

 

So comrades, that is my story to date.  I will add to this post as developments occur.

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  • 9 months later...

Update:  I have now been on the Argan trial for 10 months, so it is timely for me to update my story to date.  Of course I do not know if I am receiving the apalutimide as well as abiraterone or just abi, but my PSA dropped to 0.6 and has stayed there about for 9 months.  CT and bone scans show a reduction in tumor size of about 30% at the last set of scans in November, with the next set due in February.  I am pushing for an off-trial PSMA PET in the new year to confirm what the CT is telling us, so we will see how that goes.  Only appreciable side effect has been blood pressure - but that seems to be under control now with medication.  Still hanging in there, now 15 years since diagnosis

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Thanks for the update, @kezza2. I was on this trial and got 8 months of benefit.  My PSA dropped gradually over this period from 19.4 until it reached a nadir of 2.4 then started to go up rapidly. Fatigue was the main side effect.

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  • 1 year later...

UPDATE 2:  Well, I got nearly two years out of abiraterone, but it has now failed spectacularly.  All of a sudden, I have cancer in the lymph nodes in my throat, and an additional two bone mets on my skull..  I have withdrawn from the Argan trial, and my med onc has prescribed enzalutimide as the replacement.  Based on Chuck's postings and the associated trials he has quoted, I will include metformin and B12 in my daily medication.  I still have chemo to fall back on to if this one fails.  Here's hoping for a few more years

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