Inconclusive results from BMB

[margaritampn]

My bone narrow biopsy results were inconclusive.

Positive in Jak 2. Negative tests results for lymphoma and leukemia. Red blood cell, white blood cell and platelets are all high.

They cannot determine what exact disorder I have. As a result, there has been no recommendation on what to do with medication, lifestyle changes, etc. My doctor just suggests that I continue doing what I am doing.

This is a bummer since I was hoping to get treatment. I don’t know what’s going to happen next.

Anyone in this group with the same result? What are your thoughts about this?

[hunter5582]

It does sometimes happen that a BMB has inconclusive results. It is actually a very limited sample that is taken and sometimes they just do not get what they need for conclusive diagnosis. (Just heard this on a recent Webinar). Sorry to hear you will have to live with some uncertainty, but the truth is likely that it does not matter whether they call this PV or a more generic MPN-unclassified. What matters is your actual symptoms and risks - and how best to manage them.

I recall you had mentioned to possibility of hydroxyurea. If you are over age 60 that would be a common consideration. PEGylated interferon and ruxolitinb would also be possible if cytoreduction is needed. I do not recall whether you have started with venesections (AKA therapeutic phlebotomy). I expect your HCT would be higher than desired and that is a core treatment goal (HCT< 45% male, 42% female). I am sure you will be working that all out with your care team.

Do please let us know how you get on.

[clubdino]

My BMB results from over a decade ago were fairly unremarkable. I also had high white blood cells, red blood cells, and platelets. My red blood cells normalized over the years but my platelets high and my white blood cells are usually high as well. I was diagnosed with ET CALR positive. Did your doctor test you for the CALR and MPL mutations?

[margaritampn in reply to clubdino]

Thanks for this. We are still in the process of figuring things out. I am seeing a Specialist in January. What kind of treatment are you getting and how are you feeling?

[clubdino in reply to margaritampn]

Well my case is rare in that it hasn't progressed at all. I've had it for 16 years and my platelets are pretty much the same and I don't take any treatment. I do have symptoms though such as severe fatigue, bone and joint pain, and occasional scintillating scotomas. How are you feeling?

[margaritampn in reply to clubdino]

Just fatigued and skin itches and I have rash all over. I feel like it’s eczema but it’s severe that my body looks like a dalmatian. Other than that, I’m pretty okay and normal.

[clubdino in reply to margaritampn]

Many ppl with polycythemia have severe itching. If you search on here you will see that some people have some helpful tips for that. Although I think their skin usually itches but there is no rash. Seeing a MPN specialist is definitely the way to go. Good luck at your appt. Oops I just saw that you are JAK2 positive...so you don't need to be tested for the other mutations. Also I was diagnosed young like you...around age 27. Your platelet count is much higher than mine but I think the fact that your bone marrow biopsy report was inconclusive is a good thing because there was no severe disease noted in your bone marrow. I'm wondering if your skin rash is related to mast cells. In MPNs our mast cells act different than in normal people.

Info on skin disease and MPN:

news.cancerconnect.com/myel...

dermnetnz.org/topics/skin-m...