Got sent this which may help or aid your knowledge or answer any questions you may have
Please note: it is from the US so medication may not be available to us but I’ve heard from this specialist before and found him rather insightful.
I’ve added the timestamps to see if anything takes your fancy
Myeloproliferative neoplasms (MPN) Advocacy & Education International hosted a webinar with Dr. Raajit Rampal, Memorial Sloan Kettering, to discuss symptom management and answer numerous questions from the viewers.
TIMESTAMPS
00:00 A Conversation with an Myeloproliferative neoplasms (MPN) Specialist
00:51 How are symptoms being managed, generally speaking?
4:49 How do you delineate between menopause and symptoms for your women patients?
6:38 I’m afraid to have dental implants. What precautions should I be taking for a minor surgery?
8:37 Can Essential thrombocythemia (ET) cause bone lesions?
9:40 My wife is on Jakafi and continues to gain weight even on a low-carb ketogenic diet. Is this due to her metabolism, Jakafi, or her Myeloproliferative neoplasms (MPN)?
10:58 I took Ojjaara for 9 days and my platelets dropped to critical levels. I had a severe cough and sore throat plus full body hiccups and it was recommended to lower my dose. Can Ojjaara slow the progression of MF?
12:24 Is there any medication that helps with the itching?
15:06 Can Essential thrombocythemia (ET) cause bone pain in my leg?
16:57 What is your opinion regarding switching from hydroxyurea to Pegasys or Besremi due to the possibility of altering the course of the disease?
19:38 I am suffering from depression on Besremi. What should I do?
21:51 Can you give examples of the stimulants that may help with fatigue?
22:52 Have you ever seen any twins who both have an Myeloproliferative neoplasms (MPN)?
24:21 Can you offer any comment on the recently published study ARES trial on using low-dose aspirin twice a day versus once a day for precision anti-platelet therapy in Essential thrombocythemia (ET)?
25:52 Is there any possibility that having an MRI could replace a BMB?
27:54 Do you palpate the spleen with your patients?
29:32 My hematologist will order phlebotomy if my hematocrit or hemoglobin is elevated but not if only the red blood count is elevated. What are your thoughts?
30:41 I am a 60-year-old woman who had a hysterectomy at 50. I have been on hydrea for 18 months but for the last 6 months, I have had terrible night sweats. What can be causing this?
31:46 Are bloodshot eyes a symptom of Essential thrombocythemia (ET) or from the hydrea?
32:21 Could advances in gene technology reduce or eliminate the JAK2 mutation?
33:48 Are there any genetic tests that can be done to test for family members of someone with an Myeloproliferative neoplasms (MPN)?
36:53 How will the current disasters in NC and Florida impact the research and patient care at Myeloproliferative neoplasms (MPN) Centers?
39:07 What are your thoughts on inrebic and its side effects on the heart?
39:48 I have multiple non-driver mutations besides a high JAK2 VAF, what is your opinion on taking hydrea?
41:54 What drug are you more apt to prescribe if a new patient comes to you?
43:51 How influential are life stressors influential on symptoms and platelets?
44:38 Is it possible for Polycythaemia vera (PV) to not progress?
46:48 When you have a bone marrow biopsy, is the result for that area of the bone marrow the sample was taken or is your bone marrow the same throughout your body?
