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Update from John Spencer (Last Legs)

Last Legs

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Hi forum members

I read all the despatches on this web site, so it is probably time I submitted my own experience (so far) for the benefit of members.

I am currently classified as a Metatastic Castrate Resistant patient. I was first diagnosed with Prostate Cancer in 2004 with a Gleason of 8 and PSA of 28. I chose watchful waiting (probably strongly influenced by the fact that I was living in rural NSW at the time and the prospect of frequent, expensive travel, to Sydney for treatment was something I wanted to avoid). This decision served me well for 10 years during which time my PSA fluctuated but did in fact continue to trend higher. At the end of 2015 my PSA hit 2000 and I had developed bone metatastic lesions. By this time we had moved to Melbourne and I was fortunate enough to begin treatment at Peter Mac. Cancer hospital

In May 2016 I began ADT Zoladex + Cosudex which served me well for about 14 months (my PSA fell dramatically from 2000 to 2.5 in the first couple of months of treatment). Towards the end of 2017, the this ADT treatment began to become ineffective. My PSA began rising again, doubling every month till it reached 29 at the end of 2017. Fortunately there was no sign that the metatastic lesions had reignited, but I am sure that would have happened, had my oncologist not found another treatment.

In January I was admitted to the Ipatasertib Trial at Peter Mac. This is a double blind trial which over a period of 2 years will compare the efficacy of the new drug, Ipatasertib against the older drug, Abiratarone (commonly known as Zytiga).I also take 10mg of Predisolone per day as an anti inflammatory.  Because the trial is a double blind neither I nor my oncologist know whether I am receiving the new drug or a placebo. However so far so good. My PSA has fallen to 3.2 and I do feel very well with the bone scans showing only faint inactive shadows of the former metastises.

Of course, as any of you reading this will know, this disease has a way of mutating around any (and every, so far) therapy that has been thrown at it. However I may be fortunate enough to live long enough for the research people to continue to circumvent the mutated pathways that the disease throws up. For example this trial I am on tests the efficacy of the new drug against the gene P10 Loss or normal. My original biopsy (taken in 2004, but unknown to me, frozen and stored somewhere) was sent to the drug company in the USA and was tested for P10 loss. I am not going to say too much more about this mutation because I do not fully understand the biochemical implications of it. I do not know whether I am P10 loss or not because this is another part of the double blind trial where the information is not passed on to the patient or the oncologist.

However so far so good. I will keep you posted as time goes on.

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