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Originally Posted by Tupelo3
I've been following this closely for over a year and have discussed the science behind the hypothesis with both neurologists and oncologists. They all thought that this could be something that would work (although, of course, we've heard that before). I was somewhat disappointed when the FDA only approved the phase I trial for mid to late stage volunteers. Once again, this is a case where the scientists believe that the earlier the intervention with the drug, the more likely it would show efficacy. I was somewhat surprised that they would tell you interim trial information prior to a formal release of data.
I have heard of some off-label attempts with alzheimers patients that did not work. Nevertheless, I hope they are able to go to a phase 2 study so we can get more information. I'm surprised that they can't just get funding from the manufacturer, Novartis, as it would seem to be to their benefit if the drug is approved for other use outside of CML (and I think now AML also).
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I agree with you about your surprise of trial information being released. I simply asked how the trial was going and kept asking questions as the information was forth coming. I was most excited about what appears to be dopamine production in this advanced group. Also motor improvement was noted, walking in particular. I asked about tremor but she wasn't sure said not all the patients had tremor to begin with. Who knows what will happen the last three months of the trial.
I return in November when it's anticipated the second phase of this trial will begin with all stages of PWP. I've been hearing about this trial for about 16 months from the neurologists in anticipation that if I'm eligible I could enter the trial at the appropriate time. I'm hoping it's November. I'll keep everyone posted.