I’d like to ask Hunter about your Drs in the Orlando area, where I am. You changed Drs recently, I think. Would you share their names?

[TheaterCrazy]

I have JAK 2 ET, diagnosed last summer when endocrinologist saw my elevated blood numbers -750. I am on Eliquis and baby aspirin. I’ve read all I can and watch specialists on youtube. I’d like a Dr, not a PA although the Dr does stick her head in the door to say hello and that my platelets look good, and she’ll see me in 3 months. Do you mind sharing your specialists here and elsewhere? Thanks!

[hunter5582]

I actually see two hematologists. I have a wonderful local hematologist who is not by his own definition an MPN expert. He handles my ongoing care needs. His name is Dr. Amit Sarma, based in nearby Leesburg, Virginia.

I also consult with a MPN expert doc based at the Johns Hopkins MPN Center in Baltimore, Maryland - about 2 hours away. I used to see. Dr. Jerry Spivak, but he retired. I now see Dr. Evan Braunstein. The Johns Hopkins docs advise me and my regular hematologist regarding my MPN care. The MPN-expert docs have also consulted during recent surgeries. This arrangement works great.

We do not all live near MPN Specialists, but it is very important to involve on in our care team. Ethical physicians always welcome input from a more knowledgeable colleague, particularly on rare disorders like MPNs. Here is a list of MPN expert docs if you are interested mpnforum.com/list-hem./ .

Note: Tele-medicine is more available now than ever. Some of the major MPN Centers consult with cases on over the country these days.

Hope that helps.

[TheaterCrazy in reply to hunter5582]

Dear Hunter, many thanks for your reply. For some reason I thought you were in Central Florida, where we live. I’m not sure what gave me that impression.

My oncologist, at the moment, is

Dr.Schroff, but I’d like to switch to Dr.Iyengar who is in the same practice and is on your list of MPN specialists. You are always encouraging us to be proactive, but I worry about offending Dr.Schroff if I change.

What if Dr. Iyengar leaves, and I’m back with Schroff? I have ET JAK2 and my platelet number is within range I realize I should know it, but I’m just getting my feet wet, ET-wise.

At this time in my progress (5 months in) Schroff just sticks her head in the door after the PA speaks with me - my 2nd visit -. I’m apparently holding my own with aspirin and Eliquis,

I have a big information gap. I’m reading and listening to lectures, I’m overcoming my lack of knowledge slowly. What would you do? I’d appreciate your opinion.

Sincerely,

Trisha Margeson

[hunter5582 in reply to TheaterCrazy]

I had a doc at an an Oncology/Hematology practice who had me misdiagnosed as ET when I had actually progressed to PV. He referred me to his partner who had greater hematology expertise saying "Your health is more important than my ego." The new doc made very clear to me that he is not a MPN expert either. He very gladly accepts consultation from a MPN Specialist who advises both of us regarding my care. Both the docs at my local hematology practice demonstrate what the ethical practice of medicine is about. They prioritize my health over their own egos. They welcome consultation from a colleague that is more knowledgeable about MPNs.

This is not about offending a doctor. This is about optimizing your own care for a MPN. It is perfectly reasonable to want to see the doc who has the greatest MPN expertise. It is also rout right to do so. Any doctor that was offended by that would loose the privilege of providing my care. No one should ever forget that the doctor works for you, not the other way around.

If you are looking into more information on ET here are a couple of places to get started.

mpninfo.org/conferences/202...

mpninfo.org/conferences/201...

The 2019 MPN Molecular Biology Presentation is particularly good.

This article is also quite good.

legeforeningen.no/contentas...

Hope that helps