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I was diagnosed in January 2011 with a Gleason score of 9 (4 + 5) staged T4. My psa was 236. My bone scan indicated no bony metastases, however a MIR did pick up a cloudy seminal vesicle which indicated that the cancer had spread beyond the prostate. My urologist suggested I go onto L.H.R.H. analogues (Suprefact 3 monthly depot). I then visited a oncologist who agreed with the treatment suggested by the urologist. I had my first injection in February 2011. I was aged 58 at that time.
I had my 2nd injection in May 2011, my psa was down to 6. In August my psa was down to 2.74 and I opted to forego any futher injections. I was not coping very well with the side effects and the emotional stress. In March 2012 my psa had dropped to 1.5 and I was feeling, physically, a lot better.
In September 2012 my psa was up to 30 and I went back onto the L.H.R.H. 3 monthly injections. By March 2013 my psa was down to 6.26. May 2013 my psa was up to 6.67. I was told that I had become castrate resistant and a new Urologist suggested I continue with the L.H.R.H. treatment, but every 4 months as opposed to the 3 monthly injection (still Suprefact) combined with Bicalutamide (50 mg) daily.
I started this combined course in July 2013 by which stage my psa was up to 7.88. In October my psa was down to 3.85 and in December a slight rise to 3.92.
I am not coping well with this combined treatment (t.a.b.). Mentally I seem to have sorted myself out, but physically I am very weak and lethargic. I have only gained 2 kg over the past 2 years, but have lost a lot of muscle which has been replaced by fat (my opinion). I exercise with walks, but am really stuffed afterwards.
I have been advised that my next option will be chemo which I have no intention of undergoing. At this stage I feel that I should stop all forms of treatment and try and get some joy out of life, and then address any problem as and when it arises. I have a very supportive wife which has helped me tremendously, but I need to spend more quality time with her.
I would like to know if going off my combined treatment is really STUPID. I'm certain that you have many members who are or were in the same boat as me. Many thanks.
Testosterone on which the PCa feeds arises in three places: the testes (Zoladex or equivalent - I presume Suprefact is this - deals with this), the adrenal glands (Casodex supposedly deals with this) and in the PCa cells themselves. The first two types of ADT don't deal with this third source, as I have found. I've been just five weeks on Zytiga (very expensive in the USA I know) with a steroid to counter its supposed side effects and the results have already been dramatic for me. If you can find a way of getting on this, you may find, as I have found, that there are no side effects at all! If you take this route you'll need to stay on the Zoladex or equivalent, though. I suggest if you can get that extra weight off you may find the lethargy goes with it. Again, I've found that, but I confess that muscle wastage is a side effect of ADT, which so far I haven't been able to counter over the sic years I've been on it.
Morton,
I am not in your position yet but I have had the LHRH/Casodex and I know it is not easy to be on. Your oncologist is trying to keep you alive until some better drugs are available and the best way to do that is for you to stay on the LHRH and anything else that they think will help. Zytiga should help and there are a new class of nanoparticles combined with radiation particles that are starting into clinical trials that might be worth trying to get in on.
