From the recent St Antonio Patients Conference
Re the Jason Gotlib Presentation
Interesting slide re PV showing that WBC increases as Allele Burden increases but Platelets decline as AB rises. Mirrors my recent blood counts.
Discusses risking and higher risk mutations.
Re the John Mascarenhas Presentation
Make sure you watch the last part dealing with RG7388. Only 12 patients in the Phase 1 Trial so have to be extremely cautious about popping the champagne but pretty impressive results, especially when combined with low dose Peg. Phase 2 trials starting across 12 centres so fingers crossed.....
Re Dr Verstovsek Presentation
Discusses MF treatments, last few slides refer to a new drug called PU - H71 which has only been used in the Lab on mice but with pretty spectacular results. This will now enter trials so fingers crossed, looks like closest thing to a possible ‘cure’ (other than SCT) that I’ve seen. However it is very very early stage and most successes on mice don’t translate to humans. But does give a bit of hope...
Re Dr Jeanne Palmer
Discusses STC and in particular, Graft v Host and timing/impact of genetic mutations. I thought quite uplifting.
Re Panel Discussion
Dr Verstovsek (about 10 mins in) discusses Inf and HU. He thinks Inf can only be given for average of 5 years, 5 - 10% drop out rate pa, still get progression regardless of molecular response or normalised bone marrow. (I’d have liked to ask him whether slows progression and how does he compute his 5 year average ie include drop outs from side effects?)
He doesn’t believe HU increases AML risk but does believe that increased long term risk of skin cancer. I think this is the more benign kind, not melanomas.
Incidentally I had my first 45 mg dose of Peg last night, no obvious side effects yet!