Pre-fibrotic PMF

[Indigo42916]

Greetings,

I have ET, MPL515L +, had a recent blood smear showing red blood cell count as, teardrop, target cells, and other defective rbc's. Their frequency was rare, but never had this before. My doctor not concerned, but haven't read about this with ET.

I am concerned might be moving to early myelofibrosis. Anyone with a similar experience?

Thanks to all!

[MPort]

Hi i have had this in the past and investigated it. From memory the answer to this requires highly technical knowledge but in very simple form it means immature ie smaller blood cells. I think they are released from the bone marrow before fully formed. They are not as effective as fully formed larger cells but they are not a problem just an indication of how your treatment is effecting the formation of the cells. For me this changed ie they became normal size and years later I saw the comment again. I hope I have got this right and this helps.

Mairead

[Indigo42916 in reply to MPort]

Thanks so much for your response, this makes sense, although I only take aspirin. It alarmed, as it was a new result. I will be seeing an MPN specialist soon, just want to stay on top of everything.

We have to be our own advocate, yes?

So glad this resource is here.

Take care.

[MPort in reply to Indigo42916]

Hi I have been thinking about your tear drop results while you are only on aspirin. I had these after venesections in the early stages of my 12 year PV experience. I understood the bone marrow was in overdrive due to the confusion it feels when large amounts of blood is lost.

So why are yours like that when only on aspirin? It might be useful to know why this is. It is a highly technical question and needs to balance your blood experience, symptoms and test results. As you say being your own advocate is important. A wait and see needs to be based on sound evidence.

Kind regards

Mairead

[Indigo42916 in reply to MPort]

Good Morning,

Thanks again for responding. It is confounding, as I shouldn't have RBC problems with ET. My RBC counts were normal, so the abnormal cells are rare but, what is it indicating? These type of cells are seen with myelofibrosis, and it can't be PV because the MPL mutation is exclusive to PV.

I also recently learned that with ET and the MPL mutation, more likely to convert to PMF, 25-30 percent. So I think I might have pre-fibrotic myelofibrosis.

Time to see an mpn specialist!

Thanks for your interest, take care.

[Snook37 in reply to MPort]

MPort - I was just diagnosed PV JAK2+ Oct 2020. I have seen the teardrop cells crop up after my 3rd or 4th weekly phlebotomy/venesection, and now I’m at 13 over 13 weeks and it seems to have gotten worse (mild/moderate numbers) with many other abnormalities now that seem to be related to low iron. What was your experience at the beginning, and what medications were you on? This also coincided with starting pegasys on nov 7, 2020. My iron stores have really decreased along with my MCV since the phlebotomies began.

[MPort in reply to Snook37]

Well from what you say there is so much going on for you in the past months. When I was at this stage 15 years ago I had a bone marrow biopsy so check it's condition. This is considered useful for the future ( my results were lost in a not joined up system) and for current state of play. This might be useful for you. On the abnormal shaped blood cells I think from memory they will go back to normal once you get over the venesections and the interferon takes effect.

I trained myself to see venesections as a gift although I avoid them strenuously. A necessary misery. Because they made me very fatigued. It took a while for the interferon to take effect and for me that brought it's own misery plus I still had to have venesections. But I stuck with this and although I always have a down day after injection my counts have been stable for a long time and there are no teardrop shapes reported.

It is like being in a storm when you are at this stage. But storms pass and you can look forward to calmer waters.

Best of luck and keep posting your progress.

Mairead

[Snook37 in reply to MPort]

It has been quite an experience. The bloodletting is getting to me but I keep pushing through. Praying that the peg takes effect to sort out these issues. I will keep you updated and truly appreciate your support and response, as well as everyone’s support. Hct is stubborn at .50, and RBC count still in mid 6s. Hard to believe I can replace them so quickly with these subpar shaped small cells. Just hoping to keep any MF at bay for a while.