Any ET (CALR+) Hematologist experts in the US?

[2017S]

I see a lot of posts about how wonderful Guy's is for treatment. Is there anything comparable in the US? I am willing to travel for the best care. I live in upstate NY, so London is not possible.

[Mazcd Partner MPNVoice]

Hi, I am sure there will be lots of suggestions from other people, but one you could try is the Mayo Clinic

mayoclinic.org/diseases-con...

Best wishes, Maz

[zvinkovic]

Hi,

I was diagnosed with ET 18 years ago at age 19 following a clot in left leg.

Here is a link to a list of patient recommended hematologists

mpnforum.com/list-hem/

I think dr. Silver is highly recommended, I have no first hand knowledge because I live in Croatia, but he definitely is one of leading MPN specialists.

Best wishes,

Zlata

[Rachelthepotter]

Agree about the Mayo. Their website also has some excellent patient info, and links to published independent research, data on prognosis and so on. Looking at who is doing the research can be a useful guide. Seems to be a lot going on in Paris, too.

I spent a year in the States as an 18 yr old, and the family I lived with in Princeton took me hiking in upstate NY near Rochester. Happy memories.

Best regards

[katiewalsh]

I recall seeing speakers on Patient Power who were from the east coast. But I'm sorry I don't recall their names and locations. I'd check to see if you can locate them through that site. I think it's likely that you have some really good one S where you are. Otherwise, MDAnderson has Dr. Verstovsek. I call him the Guru of MPN's. You could go for a consult and see who he recommends near you. Good Luck. Katie

[Andyls]

There are many mpn specialists in the states, at Mayo, Hopkins, New York, Texas, Chicago and elsewhere. One way to learn about them is through a very active group with an online digest similar to this plus many other resources at mpninfo.org/.

[Meatloaf9]

Hi,

I just saw this post. I saw a Dr at Cleveland Clinic this week who I think is excellent. It may be closer for you than Mayo clinic. He specializes in MPN's . His name is Aaron Gerds, very nice man and answered every question I had without hesitation, and I had a lot of questions. Hope you have already found someone you are happy with, if not consider Dr. Gerds.

Best of luck to you.

[LucyAshtonGeering]

There’s a Dr. Ruben Mesa who is a leading MPN specialist in the US; those who are being treated by him sing his praises and he’s very active in research and trials. He seems to be in Texas..? patientpower.info/bio/ruben...