I was diagnosed in April 2016 at age 49, with multiple bone mets and Gleason 10 disease. Initially I found it very hard to cope with this, but I managed to get over the initial shock and get on with my life.
I have been through, cryo-ablation to the prostate twice, Zolodex implants every 3 months, chemo (Docetaxel 3 weekly for 6 rounds). I have also tried various protocols of 'alternative therapies', I eat well (plant based), I try to look after myself with meditation, regular exercise etc. I also take about 20 supplements, which have evidence of killing cancer and/or strengthening bones.
I've had several CT/bone scans along the way, with virtually no change (which I can handle) but recently, things have progressed. Over the past 6 months (since chemo finished) my PSA has risen from 0.69 to 3.6 and my oncologist has confirmed castration resistance. I can handle this also. I have recently added Xtandi to the mix.
The scary development has been progression in bony mets. I met with my radiation oncologist yesterday and he said that although I don't have any new mets, he's concerned about two sites in my spine. I have mets at T6,T7 and L4. The met at L4 has grown larger and is now causing quite a lot of pain and has reduced my mobility. The RO has recommended 10 doses of radiation to this L4 vertebrae with the aim of slowing the progression and reducing pain. From what he was saying, he wants to radiate from the front and he said the radiation can also damage the tissue between my belly and the site of the cancer at L4.
The site he's most concerned about is T5, which doesn't show up on the bone scan, but on the CT scan there is evidence of Lysis (bone destruction) so he's recommended spot radiation there too, along with 4-weekly Xgeva shots (I had the first one yesterday).
He told me that if the treatments don't slow down the degradation, I'm at risk of a spinal event and given the location, that could be very serious, leading to paralysis and possible death.
I've started the ball rolling on the spot radiation, which should be starting on Feb 12th.
I guess I'm looking for anyone who can offer words of encouragement, or anyone who has faced what I'm facing. I will handle whatever this condition throws at me, but my hope has been severely dented.
Also, does anyone know of any alternatives I could consider. I know about Lu177 trials in Australia, that I can possible tap into, but that may not be quick enough as things seem to be progressing quite fast. Also Radium223 is not available in Australia to my knowledge.
Thanks for listening.