MPN Advocacy & Education International was joined by Dr. Andrew Kuykendall, Moffitt Cancer Center, to provide a brief update on what research was presented at ASH and answer patient questions.
TIMESTAMPS
00:00 A Conversation with an MPN Specialist: ASH Updates
21:14 Can you explain the discrepancy between ET being a progressive disease and the fact that a person with ET can have a normal life expectancy?
25:16 Does ET always progress?
27:40 Regarding hydroxyurea, are the side effects dose-related and/or related to the length of time on hydroxyurea?
28:46 Does a low EPO value mean a greater likelihood of progression for ET?
30:24 Are there any new thoughts on triple negative ET?
31:19 Pegasys is often prescribed off-label for ET, so why can't BESREMi also be prescribed off-label and not wait for FDA approval?
33:34 Can you talk about CAR-T updates?
34:51 When is the MANIFEST-2 trial expected to end?
36:06 Can portal hypertension be the result of my ET?
37:32 Would oxygen on hand help with fatigue?
39:02 How many studies are consulting patients/consumers regarding desired patient-reported outcomes?
40:49 Were any updates presented on BESREMi investigating a more aggressive dosing strategy?
42:44 Am I more likely to progress with an ASXL1 and JAK2 mutations?
44:58 When is the best time to have a stem cell transplant?
48:17 Is progression to AML more likely with an MPL mutation?
48:38 Could following an anti-inflammatory diet help with my MPN?
50:40 Is there any benefit to using interferon to slow down the progression of the fibrosis of my MF?
51:22 Is there an estimated time when BESREMi will be approved for ET?