← Return to What are treatments for myelofibrosis?

Discussion
vas73 avatar

What are treatments for myelofibrosis?

Blood Cancers & Disorders | Last Active: Sep 4 8:39pm | Replies (97)

Comment receiving replies
Profile picture for Lori, Volunteer Mentor @loribmt

Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at Mayo. I confess, I’m a bit biased having gone through a bone marrow transplant at Mayo-Rochester. It’s now my home away from home but it gives me an inside perspective of the incredible care you’ll receive there.

A bone marrow transplant can be a curative option for Myelofibrosis where there’s a high probability of progression. While I was undergoing my BMT for AML (age 65), I met another woman who had her transplant a couple of weeks before me for MF. We’re still great friends, though we live a 1,000 miles apart. But here we both are, six years post transplant, healthy, active and in our early 70s. Her MF is in a durable remission.
If it’s warranted your doctor may consider your request because from what I’ve learned, the healthier and stronger you are going into transplant, recovery is generally easier and the transplant may have a better outcome.
Mayo’s transplant center is 2nd to none and filled with super heroes. ☺️
Are you all set with your patient portal? That becomes your lifeline of communication between you and your specialist and care team. You’ll be able to access it to see messages from the staff, check your appointments and see lab results
I forgot to ask, which campus will you be visiting?

Jump to this post


Replies to "Welcome to Connect, @davi0937 You’re going to be in terrific hands with the hematology dept at..."

I wish I could convey how your reply gives me hope. It is a light in a dark place. The last month has been such a terrible time. I have a wonderful partner but it is still very lonely managing the emotions of a diagnosis. I live in the cities in Minnesota so will be seeing a provider in Rochester. Blessings to you for your beautiful presence here in the Connections forum.

Thank you @loribmt

I understand the bmt requires a number of tests before approval for the procedure. What tests are required? I am also wondering about finding a donor, I understand there is a large marrow bank - but would like to consider using one of my children even if it’s not 100% match. Do you know if the match preference is female if the patient is female? I’m also curious if once the prep is done and the new marrow put in - are you encouraged to do anything other than be isolated? Thank you again for your help.