I commenced the trial about 2 months ago and I have now had 2 cycles of treatment consisting of testosterone injections and carboplatin infusions. 5 days ago I had my first CT and bone scans and the trial leader tells me my 3 detectable rib metastases are 'stable'. The stable assessment is good enough to keep me in the trial. The main side effects have been fatigue for a week or so after the chemo infusion but in the last few weeks my usual modest exercise has me breathless and in the 9 weeks since I commenced my weight has increased by around 4 kilograms. My breathlessness and weight gain seriously troubled the trial team but my ECG was all clear and I'm booked in for an echocardiogram on Monday. I'm not anticipating a medical problem and my response is to increase my exercise regime and apply a lot more self-discipline with my diet.
One phenomenon that has required a total rethink, is my 5 years of hard earned experience monitoring my PSA increases and declines. After 9 weeks of BAT my PSA increased from 50 to 324! The supervising Professor helpfully told me this was high but my disease is stable. So there you go - focus on the results of the scans not the PSA numbers.
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Bjry
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Thanks TA, I encouraged myself with the thought that the cancer clearly had a strong reaction to the testosterone, but only time would tell me whether that was good or bad news.
Thanks TA, well that gives me more than a few things to think about.
I saw in Denmeade's patient's guide to BAT his comments on patients with my type of response. He said "The third type (blue lines) are the most difficult patients to manage on BAT. These patients typically have a big increase in PSA after the first or second cycle of BAT. The PSA then often plateaus as a stable level or rises very gradually over time. These patients do not show decrease in tumor size on CT scans. Instead, they have prolonged stabilization of disease, in some cases for several years. Even though PSA is not going down, we usually continue these patients on BAT if they are having a clinical benefit and their disease remains otherwise stable on imaging studies and without progression of clinical symptoms."
At present my intention is to stay the course and hope my 3rd cycle of treatment on 21 December stabilizes my PSA and my metastases.
I think Denmeade is a booster of his own program, and the empowered patient has to look beyond his confirmation-biased statements to the actual data. Here they are:
The problem that BAT has always had is that some patients (20-30%) do very well with it, some do very poorly (I think you fall into this category), and most are unaffected by it. The problem has always been patient selection - pre-identifying the top responders and those for whom it is unsafe. The most interesting trial IMO has been this one:
• They learned that high androgen receptor (AR) activity is required for BAT to work. Only about ⅓ of CRPC men have high AR activity.
• Xtandi (but not Zytiga or other advanced antiandrogens) prevents acquired resistance to T because it upregulates the AR while it inhibits it.
IMO, all test subjects should have be screened by their AR activity before starting a trial.
So far, the only benefit, other than QOL, found for BAT (in the RESTORE trial) was that it was able to extend the time that Xtandi is effective. (It's also been found in the PRESIDE trial that chemo extends the duration of Xtandi effectiveness).
So far, all the BAT trials a Johns Hopkins with published results (except TRANSFORMER) have used PSA50 (the % of participants who benefited with a PSA reduction of at least 50%) as the primary endpoint.
The SPECTRA trial at the U of Washington sounds similar to your trial. It also uses PSA50 as the primary endpoint. According to the trial protocol, you would have been removed:
Of course the PSA surge is concerning but the CT scan is stable which allows you to continue the trial. I'm inferring from your post that the supervising professor is also concerned but right now you satisfy the criteria for continuing in the trial, ie stable disease via scan.
The next 30 days is key...if no improvement and continued rise in PSA, you will probably fail the trial. But in the mean time, I'll pray you do not and can continue. Good Luck.
Dr. Denmeade has more credibility than anyone on this site. That includes me and anyone else who offers their opinions.
His advice is that if PSA rises more than 25% from baseline to end of BAT cycle, and especially if it progressively rises, then you are considered an "unfavorable responder" and should not continue it. Almost always one returns to baseline and no harm (progression) is evident on scans.
BAT with chemo is different and I'm not sure what the trial stops are.
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