A Conversation with an MPN Specialist: Everything You'd Like to Know About Your MPN

MPN Advocacy & Education International spoke with Dr. Aaron Gerds, from the Cleveland Clinic, to discuss and answer numerous questions from the live audience. TIMESTAMPS 00:00 A Conversation with an MPN Specialist: Everything You'd Like to Know About Your MPN 02:14 If you are receiving IVIG plasma infusions, does this exclude you from clinical trials? 04:36 Are you recommending switching ET patients from hydroxyurea to pegasys or BESREMi? 06:40 What's the difference between an MPN specialist and a hematologist/oncologist? 08:06 Could hydroxyurea effect my asthma? 08:50 I have ET and live in the Northeastern US. I have had 4 nosebleeds and take baby aspirin and hydrea. Is this common for MPN patients? 10:50 Many PV patients use beta-alanine as an anti-itch remedy. Do you know any research being conducted investigating the benefits of this? 13:53 What does a JAK2 12-15 on Exon 13 mean when it is of unknown variance? 16:29 My gums and teeth are rapidly deteriorating but my doctors don't want me to change from hydroxyurea. What advice do you recommend? 18:51 Do you suggest patients record or track symptoms? 20:13 If a patients on hydroxyurea develops basal cell carcinoma, is that a reason to stop taking it? 21:39 What are the most important blood values to pay attention to? 24:26 Are triple negative harder to treat or more difficult to admit into clinical trials? 26:13 Is there any further information on ET with the MPL mutation? 28:03 I've seen multiple doctors and have triple negative ET with platelets hanging out around 1.1 million. The doctors have disagreed on the use of aspirin since I don't have AVW. What's your take on this? 30:35 What treatment options are there for a PV patient with diabetes and other complications? 34:26 Are there any recommendations for MPN-U? 36:06 If someone were to have a negative interactions with interferon, would it happen right away? 36:51 Would you recommend a 75 year old patient with PV on hydrea switch to BESREMi? 40:16 Is there anything you suggest to help with fatigue? 42:15 What lifestyle changes, if any, can patients make to help with fatigue? 42:49 Are calcified granulomas common with MPNs? 43:31 What is the relationship of the ratio of lymphocytes in terms of long-term survival? 45:55 Are you aware of any studies on combination therapies for the molecular benefits? 47:26 I have PV and take hydrea and would like to switch to BESREMi but worried about the autoimmune side effects. 48:53 How often should additional genome testing be done? 50:37 Do you see leg pain in ET patients? 51:30 I have PV and on switching to BESREMi. Should I check my allele burden before switching? 53:28 What is the meaning of elevated LDH to MPN patients? How high is too high?