After undergoing a biopsy, I was diagnosed with inoperable Prostate Cancer. For five years prior to the diagnosis, I had 6 monthly PSA and digital inspections, my PSA was 5.0 and has never been higher. other than after a TURP (Transurethral Resection of the Prostate), when it went up to 7.0.
At the first digital inspection, there were lumps in my prostate, but I was told by my MD that they were caused by age. It was only on my request that I was sent for a biopsy. Eight specimens were taken and they all came back positive.
My Gleason score was 4+4=8 and the cancer had moved outside the Prostate. I was told by the urologist that I had a very aggressive cancer. The only options I was given, was hormone treatment and radiation. I was on Lucrin (aka Lupron) for 6 months then received 36 radiation treatments. The radiation damaged my bowel and anus also I am Impotent and have ED.
I was having tri-monthly Lucrin injections for about five years, then my PSA started to rise again to 5, I was informed that my cancer was in the advanced stage and I was prescribed Casodex.
I have been passing quite a lot of blood in my urine for the past 2 years, but after 2 exploratory operations which failed to stop the bleeding, I was told I had to live with it, as they couldn't find the source of the bleeding.
Last month (October) my PSA started to rise again and I was advised to see a Medical Oncologist regarding the advances in Chemo for the problem. The oncologist did not recommend that I be treated by chemo, but suggested that I go on a Trial, being run by Cougar Biotechnologies, who are testing the drug, Abiraterone Acetate plus Prednisone (CB7630). I have agreed to take place in this trial, but there is a 50% chance that I will be administered a placebo, as it is a randomized Double Blind Placebo Controlled Study, which of course means that if I get the Placebo, I will not be receiving any medication for the length of the trail. except my Lucrin injections (choices, choices).
The cancer has now moved into a 2.5cm lymph node in my abdomen, so it is spreading. I am now in the lap of the Gods, wish me luck!
Since October 2009, I have finally got the medication for the above mentioned Trial, today 5 February 2010.
Over the last 3 months, I have absorbed more radiation than Hiroshima, enough blood taken to feed Dracula for a year and travelled who knows how many Kms to and from the Hospital for tests. Lets hope that it was all worth it. I will start taking the horse tablets (they are huge) tomorrow, 4 X 250MG tablets on an empty stomach = 1000MG, then wait for an hour before eating, plus one 5MG Prednisolone with food twice a day.
If I survive the first day and don't choke to death on the tablets, I will keep you all informed on my progress whilst on the Trial.
Later: Well, I received very good news this morning, 19 February, regarding my PSA: in two weeks, since I started the Trial, it dropped from 5.8 to 3.8, so I hope that means that I am taking the actual drug and not the placebo. No side effects from the drug, so far. The only side effects that I have added to my list, are from the Prednisone. Hopefully It will still continue to drop at my next appointment on 3 March, when I have my next round of blood tests.
Another day of good news, 3 Mar 2010. My PSA has dropped again from 3.8 two weeks ago, to 2.6, My blood Pressure has gone from a little low, to back to normal, (eating bananas for Potassium). Only four weeks into Trial and so far no known side effects. Looking good so far. Next set of blood test on 18 March.
18 March, 2010. I had to miss my appointment for Blood tests on 18 March, because my wife was very sick and I had to stay home with her. My next appointment is on 1 April, when I will have scans as well as blood works.
So far everything is good on the Trial, I had been passing blood in my urine for about the last 3 years and that stopped about 4 weeks ago. Other than bursting into fits of laughter for the smallest of reasons (Prednisone side effect), I am feeling no worse than when I started the Trial. I hope that the initial low blood pressure, the cessation of blood in urine and falling PSA, means that I am not on the Placebo arm of the Trial.
Well the good news continues on the Trial.
My PSA dropped to 2.3, Scans showed that the Lymph node invasion has shrunk slightly. My next appointment is 15 April, for blood tests. The bone scan was also clear.
15 April, 2910. The good news is that I got the results of my Blood tests today and my PSA has now dropped to 2.1 ng/L. Only a small drop, but it dropped and that is the main thing. I was told that I can stay on this experimental drug until it fails to work, hopefully that will a few more years yet.
I only wish this drug was approved for general use, as it seems to be working for me, so hopefully it will not be to long before it is available for all Terminal Prostate Cancer sufferers.
30 May, 2010. Blood tests yesterday, 29 May and got the results today, PSA is still falling, it is now only 1.6ng/L. I am a very happy and lucky man that this experimental treatment is working for me, it was a 50% chance of getting the drug or the placebo and I got the drug. All you people out there, who have been told that there is nothing further that can be done for you, get onto your doctors and demand that they find you a trial that you are eligible to take part in, if you get on the placebo arm, then join another trial, never loose the faith that there is a cure out there for you.
The other good news today is that Provenge has been approved by the FDA, now let's hope that the cost will be covered by the insurance companies, or better still that it will be covered under the Pharmaceutical Benefits Scheme, so that everyone eligible, will have access to this treatment.
Good News Week.
I have just started Cycle 5 of the Phase 3, Randomised, Double-Blind, Placebo-Controlled Study of Abiraterone Acetate (CB7630) Plus Prednisone.
It's all good news, my PSA is still dropping, be it slowly, it's dropped to 1.4, down from 1.6 at the start of Cycle 4. I consider any drop as very good news, as I would accept a stable PSA as good news, so a drop is fantastic.
All my scans, i.e. CT and Bone have not changed and the rest of my Blood works are good.
I can LIVE with the side effects, a lot of which are from the Prednisone, I start Cycle 6 on 24 June, but they are only Blood tests, no scans.
So to all you Guys out there, suffering from advanced PCa, please try to hang in there until this drug is approved, which as far as I am concerned, it should be, sooner rather than later. Maybe we could petition Cougar to add a Compassionate arm, so that sufferers could apply for the drug on compassionate grounds, as saving lives and giving hope, is surely the name of the game. [I'd like to think that is so, but regret that shareholders may be more important than patients, income being more important to some than outcome.]
Later: Had my blood tests again yesterday, 24 June 2010, the result is that my PSA has dropped to 1.3, only a small drop, but anything is better than a rise and the cancer still seems to be under control.
Whenever Traditional medication or treatments start to fail, find a Clinical Trial, preferably one that is in the Phase III stage. Best thing I ever did was to take part in this Trial. So very lucky not to have gotten the Placebo.
Never give up hope and stay positive.
Went for Blood works and scans yesterday 22 July, all good news, PSA has dropped again to 1.1ng/ml and the Lymph Node invasion has shrunk in size.
A new side effect that I now have, is that the Prednisone is affecting my sight, I am seeing double and have blurred vision, this side effect comes and goes. I have an appointment to see an eye specialist on 13 August. It seems long term use of Prednisone can cause Glaucoma and Cataracts.
Still marching on.
The last 4 weeks have been a little bit scary, because I started passing a fair amount of blood in my urine and I had to have a brain scan, to see if my sight problems were being caused by mets in the brain. Well the results of the brain MRI, were good, no brain cancer detected (great sigh of relief). But they still haven't found out yet what is causing my blurred and double vision, so the saga continues in that area.
I had my 4 weekly blood tests yesterday and to be honest, was expecting my PSA to rise, but it is still the same as 4 weeks ago 1.1, so I am very happy with that result.
The eye Specialist also got me to do some blood tests and I am seeing him on 28 August, for the results. If they don't tell him what is causing my vision problems, I guess he will either do more tests or whatever.
All in all, life goes on and I treat every day as a bonus, though I wish I could find a way of stopping my wife worrying about me. I hope and pray that all you sufferers, family and friends, stay positive and maintain the strength to fight this disease.
Had my blood tests 16 September, PSA still 1.1 for the third time in a row (12 weeks).
Had a skin cancer removed from my neck on Wednesday. They can't find out what is happening to my eyes, so no news there. They don't seem able to do any thing about it, they are hoping that they will heal themselves????. I don't think my Labrador will be a very good seeing eye dog. lol. Oh well, life goes on and I am happy about that.
Good Luck and best best wishes to all you PCa sufferers out there. Keep Positive.
It will be 10 years since my diagnosis in May 2002. I am still on the Zytiga trial and it is still working for me.
You can disregard everything that I posted regarding this trial.
I went to Brisbane on Thursday for blood tests, scans and see my Specialist and he told me that they had unblinded my Zytiga Trial that I am on. Talk about the Milky Bar kid, it seems that I am the suger tablet Placebo kid, I have been taking 4 suger pills a day for the last 2 years and 3 Months!!! Well maybe suger is good for you after all. lol. Another weird thing is, I had my scans and blood works done last Thursday, my PSA has dropped from 4 to 3.4 and the scans are unchanged since the ones I had 12 weeks ago. Myself, all the Specialists and even Prof. Gerry Potter, were convinced that I was taking the drug, not the Placebo, we were all wrong. It certainly says a lot for Watchful Waiting, as other than Lupron, I have not been receiving any treatment for the last 2 years and 3 months.
I have been offered the real drug, but have declined, I am still going to remain on the Trial so that I can obtain the drug when and if I need it, why take the chance of all the side effects, as I seem to be doing something right to keep this cancer at bay, what it is I do not know.
When I last updated my journey with PCa, I stated that that I had declined the offer of the real drug, but I have since been advised, that if I did not continue on the Trial and take the real drug, it would not be available to me, when I need it in the future. Needless to say I have accepted the real drug, as at $5000 per month, it is way, way beyond my means.
The last month or so, has been a real merry go round, when I was informed that I had been on the Placebo, (17 May) my PSA was 3.4, on 14 June, it had risen to 5.8, 21 June, 7.1 the highest it has ever been, 28 June, dropped to 5.8, it will certainly be interesting to see what it is on 12 July, after 2 weeks on the real drug, I started taking it 29 June. So far I cannot report any new side effects, but maybe it is a bit early to tell.
I passed my 10th year since diagnoses on 14 May, 2002, (inoperable, very aggressive and had spread out side the Prostate, given 6 months to live) all in all I feel good within myself, that I will fight this battle to the bitter end.
Still fighting on, Zytiga failed for me, after 20 months on the real drug. I developed a lump on my head, which grew to the size of half a golf ball, in 3 days, 10 shots of radiation later, and that seems to have fixed that, hopefully. On the 9th January, I tripped over and broke both my arms, that meant I was laid up for 9 weeks. My last CT and Bone scans indicated that the cancer has spread to my bones and lymph nodes, throughout my body.
I was told by my oncologist, that Chemo, was the next step, because the Lymph nodes around my heart were infected and growing.
Up to this stage I had .been anti Chemo, but changed my mind, when I learnt about my heart. I started 26 dosed of Docetaxel, every Wednesday, for the next 26 weeks. 3 weeks on 1 week off., The first 2 weeks were Hell, ended up in 3 Emergency hospitals and 6 days in hospital. They have reduced the strength of the drug slightly and this seems to have worked. I had my 5th session yesterday and so far so good.
I started playing Golf again 2 weeks ago and even surprised my self, that I was able to push myself and complete 18 holes (with a Cart) I hadn't touched a club, since I broke my arms.
That about brings tne up-to-date. I hope that all you Guys out there, are progressing well with their fight against this mongrel disease.
[Sadly, we were informed that John Farrow passed away on 7th February 2016 after a long hard fight.]