Connect with others who understand.

Sign up Log in
Resources
About myMPNteam
Powered By
Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Myelofibrosis Specialist Referral OHSU Portland, OR

A myMPNteam Member asked a question 💭
Bend, OR

Looking for a MF specialist in the Treatment department of OHSU. Apparently, Transplant is a different department than Treatment.
My platelets are at 33...very low. And with low Hemoglobin constantly in the 6.6 to 8 range (w/transfusions every 3-4 weeks), ...I need help!
Now that Momeletinib is FDA approved, another option available. Can Pacritinib(Vonjo) be taken with Momeletinib?
Appreciate any feedback,

September 17, 2023
View reactions
A myMPNteam Member

Hi Jim, I'm being treated for PMF at OHSU also. They have great staff. My specialist is Dr. Saultz who is quite good. And you are right about the different departments and actually there are 3 that you will deal with. Treatment pre-transplant-This is at building 2 on the waterfront, 10th floor and is staffed with all specialists in MPNs, Drs, NPs, RNs, palliative care, and social services. They are great to work with. Transplants are done by permanent staff up on the Hill, 14K. Staff here are again Drs, NP, RNs, etc. and transplants are all they do. They rotate rounds on a weekly basis so you will work with several docs. All are also great to work with. (Hint, they have an unlimited supply of Hagen Daz ice cream at all hours.) For meals they will give you a restricted menu and you just call the kitchen when you want and it gets delivered. The third area is post-transplant treatment. This is also at the waterfront Cancer Center, 11th floor. They take care of you for about the first 2 or 3 months after transplant. You will go in 2 or 3 times a week for transfusions and medications based on your panel work up for that day. Each visit will take 2 to 4 hours, bring a book.
These are the only folks in Oregon certified to perform transplants.
I've worked with oncologists at multiple locations/organizations and OHSU is far and away the best! In fact, I was there today.
This is also the staff that came up with cure for leukemia!
Good luck and feel free to ping me anytime if I can help you further.

October 4, 2023
A myMPNteam Member

Hey Jim
I am sorry but haven’t an awareness of your location and the meaning of OHSU .
I’m Canadian from Ontario .
I certainly hope you get some advice from fellow MPN network folks.

September 17, 2023
A myMPNteam Member

Yes you immediately need an MPN specialist. Off the Wall referral go on YouTube type in MPN webinars or just mpns and they'll be a lot of videos and you can I'm sure find one in there. Good luck my platelets are 800 and something

September 19, 2023
A myMPNteam Member

I live in Eugene. I don't know if there is an MF specialist in Portland but I believe there is one in Seattle.

September 17, 2023

Related content

View All

Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?

A myMPNteam Member asked a question 💭
Boring, OR

I Am ET,MF The Test Results Showed That I Have A Mutated CARL Gene. Is There Anyone Like Me Who Is Being Treated?

A myMPNteam Member asked a question 💭
Viet Nam

Anyone Who Gets Occasional AFib Take Anagelide?

A myMPNteam Member asked a question 💭
Philadelphia Area, PA
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in