A Conversation with an MPN Specialist: Myelofibrosis

MPN Advocacy & Education International was joined by Dr. John Mascarenhas, Mount Sinai, to provide updates and answer questions about myelofibrosis.

TIMESTAMPS
00:00 A Conversation with an MPN Specialist: Myelofibrosis
12:32 Have you seen any patients who have CLL and also MF? If so, how do you typically treat that patient?
16:24 What is the indicative longest-term data on MF patients who have responded very positively to clinical trial drugs early and for a few years?
20:14 What is the typical amount of time a person in their late 60s with MF grade 2 with mild symptoms remains in the watch-and-wait phase before needing to start medication?
25:13 Can you tell the difference between someone who has progressed to myelofibrosis from polycythemia vera or essential thrombocythemia?
28:37 What are the differences between primary and secondary myelofibrosis in terms of treatment and prognosis?
30:37 Five years ago my PV progressed to MF, JAK2, and ASXL gene mutations, and I was told the only cure would be a stem cell transplant. I am experiencing zero symptoms and am very active. I am about to turn 70 years of age and uncertain if I should really look into a transplant?
34:11 I am 75 years old and was diagnosed with PV almost 25 years ago and progressed to MF three years ago. I am currently taking 20mg of Jakafi daily. Is it typical to be symptom-free for this long?
37:55 I've been on Pegasys and wondering if it's capable of reversing myelofibrosis?
42:42 Thoughts on progression
46:42 Can you talk about the clinical trials that are investigating monoclonal antibodies?
50:52 Do have conversations with your patients about limiting stress and making healthy day-to-day changes to help with their care and disease?

[clemqueens]

I am so sorry to hear about you and your struggles. I have MF and will be getting a BMT in the next few months.
The conflicting support we get from some well meaning docs can be frustrating. While some of us have terrible, physical, life altering symptoms, some have none. I hope you are seeing an MPN Specialist because it definitely does make a difference. No mile is too far to go get the help you need. You can then also work with a local oncologist.

I’m sorry no one else responded to your comment. I hear you. ❤

[judiweislo]

I was first diagnosed with CLL, but then went to some other Oncologist who disagreed after taking another biopsy. MF is what I have, and I went to her for 5 years, and now I'm going to someone else. He has me on Vonjo as a starter. My question is...the second doctor told me NOT to take Vitamin D3 (MF patients) & this doctor I go to now says it's important. Which is true? I have serious pain with my dental area, and had to get teeth pulled out (all on top) and the bottom still throbs. My Hgb is low as well as my WBC & platelets. My doctor says that Vonjo is the lesser of two evils than the Jakafi in the side effects, although he likes the Jakafi too. I don't know about that. I'm getting Procrit for raising my red blood count, sigh...This illness is horrible for