Looking for an MPN specialist near Washington DC

[110srh]

Living in Northern VA and looking for a local-ish MPN specialist recommendation. Not having any luck with local hematologist oncologists being well-informed as to the standards of care. Currently on very low dose of Pegasys that might be working *too* well, and need to figure out next steps. Willing to drive a reasonable distance (4-5 hours is acceptable) for the right doc!

[hunter5582]

I live in nearby Harpers Ferry, WV. I have a local hematologist in Leesburg Virginia who handles my ongoing care, Dr. Amit Sarma, Virginia Cancer Specialists. He is a fantastic hematologist but not by his own definition a MPN Specialist.

I have been travelling to Johns Hopkins to see the docs in their MPN Center. I did see Dr. Spivak then Dr. Braunstein. Unfortunately, they both no longer see patients. Johns Hopkins reorganized and there is no longer a MPN Center. There are still a few docs who have more experience with MPNs than most hematologists. I am seeing Dr. Tania Jain. Dr. Michael Streiff comes recommended and is on the MPN Forum list. Dr. Moliterno is not taking new patients. Johns Hopkins is the closest location to NOVA where here are more MPN expert docs.

Some have shifted their care to the Weill-Cornell, Richard Silver MPN Center in New York City. They have considerable experience managing patients in the interferons. It is worth considering if you are willing to travel.

Here are two lists of MPN expert docs.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

[110srh in reply to hunter5582]

Thank you, hunter5582! I considered Weill-Cornell and those docs are definitely in my radar, but I think NYC might be a bridge too far for me at this point. I’ve also got three active teenagers and work full time (and then some, lol), so finding someone closer to home would be ideal. I’ll definitely check out your doc in Leesburg—that’s a very doable drive!

[hunter5582 in reply to 110srh]

The doc in leesburg is a wonderful doc but not a MPN Specialist. He listens to patients, takes time with each patient, and resopects the patient's knowledge and ability to make decisions. Dr. Sarma also had no problem with you seeking consultation with a MPN, He never puts his ego ahead of your health interests. That is why I have two hematologists. he handles all of the ongoing care. I get MPN-expert input to decide on a treatment plan and he helps to execute the treatment plan. Dr. Sarma also gives me an independent second opinion on every decision. This arrangement works great.

[havashan]

I live in the DC suburbs. I used to see Evan Brunstien at John Hopkins. After Dr. Braunstein left and there were no other MPN special at JH taking new patients, I decided to go to NYC to see Dr. Ellen Ritchie at Weill Cornell, Richard Silver MPN Center. I take the train from DC, up and back in one day. There is an MPN specialist in Charlottesville . I don't know of any in the DC area.

[110srh in reply to havashan]

Thanks for the suggestion about the train, havashan—how long of a trip does that end up being for you if you’re going up/coming back in one day? Never done the train to the city—clearly something I should look into.

[Banjoboots]

I see Dr. Keng at the UVA Emily Couric Cancer Center in Charlottesville. It’s about a 2 hour drive from DC and gives me peace of mind. Dr. Keng is a very smart, kind and caring practitioner.

[JT1622 in reply to Banjoboots]

I am traveling 3 hours to see Dr. Keng for the first time in a couple days. This is very encouraging.

[Labbymom]

I have not been diagnosed yet but did some research into specialists should I want to see one as this has been a lengthy process of sorting things out. I am currently satisfied with how my local Dr is keeping an eye on things so haven’t pursued a specialist further. I coincidentally had an appt with Hunter’s Dr that I cancelled when I found someone closer, but again he’s not a specialist.

If Hopkins is no longer a good option, which is a shame, the next closest options seemed like one or two drs at UVA or I believe there are several specialists at Penn. maybe someone on here sees someone at Penn.

There’s one dr at Georgetown on one of the lists. I’m not sure he’s truly an mpn specialist though although perhaps others can comment.

[George1976]

In my experience doctors trained at Cornell are the best. Dr. Spivack graduated from there I believe. Also noticed Ruben Mesa is now in Charlotte NC. Another great option especially if you live in VA.