New member and looking for specialist.

[Krag]

Hi everyone, I am a 65 year old female with PV. I’m looking for an MPN specialist in Portland, Oregon or the surrounding area. I have looked at the MPN forum list but am curious if there are any personal recommendations. Thank you for any help you might be able to provide.

[MPort]

Ask on the MPN.Net US site. They have a list of specialists through out the US

[Krag in reply to MPort]

Thank you for your suggestion.

[robbjoy]

Hi there. Here is the doctor vetted MPN expert list from PV Reporter. I travel 5 hours round trip to see my expert. It is so worth it! Good luck. pvreporter.com/mpn-speciali...

[Krag in reply to robbjoy]

Thank you for the PV Report website. On the MPNForum List of Hematologists there are two names of specialists in Oregon that I will look into. I’m not opposed to driving the distance for a specialist. How is driving 5 hours working for you?

[robbjoy in reply to Krag]

Really well. I am an established patient and the next two visits are tele via zoom. I also looked into funding for travel expenses and was approved for a hotel room if needed. My hubby drives me so it's really not too bad. 2.5 hrs each way and I make my appointment at 7 am for labs and 8 am for doc. My local docs here are clueless and one even told me I could be cured in a couple of years, another said it's not considered cancer and only HU is available. Another screamed at me for asking questions. So I went from -FFFF doctors to an A+ expert whom I love dearly. So worth it in my opinion.

[robbjoy in reply to Krag]

Remember the PV reporter list is a "doctor vetted list" and MPN Forum is "suggestions/recommends" from other patients.

[gvibes]

Hi, I am not sure your situation is but I (and I suspect alot of people on this board), end up with a local hematologist to handle day to day care, and then an MPN expert to consult with. It has worked for me. I dont think the MPN expert needs to be close to you - you can consult with national experts. I requested a second opinion and found a doc in NYC. I was able to set up in a few weeks, had a zoom consult after he read my file, and send him bloodwork by email periodically for review. I have not seen him in person to date. So far it has worked great and paid for by my insurance. My local doc is on board with this process. The national specialists are also used to working in this manner - in fact, I doubt the national experts would want to handle the day to day stuff..good luck....

[Ashtin in reply to gvibes]

I was diagnosed with PV several months ago. I am seeing a hematologist,but realize seeing an MPN expert is a necessity. I have looked at a list of MPN experts in NYC and the list is overwhelming. I was wondering what criteria you used to narrow down the list. Thanks!

[gvibes in reply to Ashtin]

Hi, It is intimidating. My process consisted of the following: 1) My hematologist recommended Hydroxyurea as treatment. I searched the internet, read papers etc and decided that may not be best for me. I looked into a trial for a PTG-300 (I think) and had communicated with Weill Cornell in NYC. It looked like I didnt qualify for the trial. 2) I figured out what I really wanted was a second opinion. I told my hematologist that I was looking for a second opinion. He said sure and gave me names at Sloane Kettering and Dana Farber to contact. 3) I had read about Weill Cornell and liked my interactions with them. I realized they had recently opened an MPN center. I decided to initiate the opinion with them and maybe I would end up in the trial at some point. 4) I called them. They apparently email information to the applicable doctors there. One doctor reached out to me. I read his resume etc and saw presentations he had made, was suitably impressed and proceeded with records transfer and set up zoom call. Its been pretty easy and seamless.

Now I was lucky because I liked the doc that reached out. What I should of done was research the docs on pvreporter list and selected a couple of candidates that felt good to my situation and then reached out to the institution specifically for that doc. It would have been hard to have said no give me a different one (at least for me) if I hadnt liked the offered doc. Not a foolproof way but maybe a little better.

There are lots of good institutions with good people out there. You can see them on youtube or through various conference records. There are major hospitals like Sloane and Anderson and lots of other good places. I like Weill Cornell because they seemed research oriented and very focused on the MPNs. I guessed (but could be wrong) that I would get more attention there versus one of the more famous places.

If you take plunge, it will work out...

good luck

[Krag in reply to Ashtin]

Thank you for your input. I have thought about a local hematologist and then if needed, an MPN who is not local. It seems like that might need to be the route I take. I’m glad it’s working for you. It’s not an easy process finding the right fit for ones comfort level.

[Krag in reply to gvibes]

Thank you for your input. I have thought about a local hematologist and then if needed, an MPN who is not local. It seems like that might need to be the route I take. I’m glad it’s working for you. It’s not an easy process finding the right fit for ones comfort level.