What tests will I need to do for my myelofibrosis and how often?

What test will I need to do for my myelofibrosis? And how often?

As you might imagine, this is also highly variable given the fact that myelofibrosis can be around for 20 years or just a couple of years. So in lower risk patients who have, you know, ten years of overall survival, often there's not a whole lot of monitoring if they're not on therapy. So it's blood counts every 4 to 6 months and a visit just to make sure everything's okay.

In higher risk myelofibrosis and those on, for instance, JAK inhibitor therapy, it's often up front blood counts, and visits every couple of weeks while we're making sure that the medication is safe and not lowering the blood counts too much. And then often, as we see that stable, that can space out, to every four weeks and then every eight weeks. And ultimately the hope is every 12 weeks or so.

And then the other big piece here is the consideration for other blood tests, like looking for mutations, which is highly variable at this point, but generally not more than once a year. And then the big question is patients always want to know is how often do I need one of those bone marrow biopsies? And fortunately, the answer at this point in time is not that often.

So we typically do a bone marrow biopsy at diagnosis, and then we don't do one again unless there's some big change where the blood cell counts are really changing or the symptoms are really changing. And we want to take a look in the bone marrow factory to see if something has changed about those stem cells.

So oftentimes we will follow blood counts. And that is generally sufficient for a lot of folks. So a standard CBC that you would get in a clinic. We will oftentimes get ultrasounds of spleens on patients. We'll use a combination of physical exam, and spleen measurements to figure out how large the spleen is for a lot of our patients.

And then over time, what I typically will tell patients is I personally don't usually follow bone marrow biopsies, unless there's a change or something concerning or something new that would make me think that that would be warranted. And the biggest concern I typically have is progression of the disease.

I personally believe, that every patient where there is concern for a myeloproliferative disease or myelofibrosis should get at least one initial bone marrow biopsy. So this, in my mind, is really important, both from a diagnostic perspective to confirm that the disease is there, and also from a prognostic perspective. So in my mind and in my practice, it really helps me figure out again where patients may be on that spectrum of disease if they have a little bit of scarring, a lot of scarring, if there's anything else associated that's present in their bone marrow.