Test Results - good news for now

[stargirluk]

I saw my haematologist this afternoon to get the results of my genetic testing and bone marrow tests. The good news is that I do not have any of the mutations or genetic markers. However, my bone marrow did indicate an increased number of megakaryocytes (elevated platelet count has been my ongoing issue). So, he told me he thinks it is an MPN - just early days. So for now, we're in a watch and wait pattern with follow ups and new blood work every six months to keep an eye on the platelet count.

I had been taking aspirin the last few weeks as I was travelling via long haul flight. However, since I'm not travelling now, I bruise easily, and my platelet count isn't that high (around 500), he said I should stop taking it for now. So, at the moment, I don't need any treatment and watching and waiting, unless/until there is a change.

So, that was very good news. Still sounds like it's ET, but nothing to be worried about at all for the time being.

[Osteomyelio]

Interesting. Does your immunologist have any ideas regarding your

gamma globulin levels? Did the test EpsteinBarr and CMV Viral Titers?

[stargirluk in reply to Osteomyelio]

Viral titers were done and negative. My haematologist ran lots of other blood tests, CT scan, etc., to rule out any primary cause of the elevated platelets. The only thing that’s been abnormal is the platelet count (since September at least when first tested) and increased megakaryocytes in the marrow.

[mhos61]

Thanks for updating us.

A pretty good outcome, you must be reassured! It’s good to know the haematologist will follow up every six months too.

If you have any further questions in between consultations, you can always check in on the forum.

[stargirluk in reply to mhos61]

Thank you. I’m feeling pretty good about where I am right now. I’ll be sure to post if questions arise. My haematologist also said I can email him at any time with questions, which is amazing!

[Ebot]

Great news. Sounds as if you are getting good care so very reassuring. Keep well!

[Ratton726]

Great news- hope you manage to avoid any other drugs !

Very best wishes

Ratton 726

[stargirluk in reply to Ratton726]

Thank you!

[MPort]

A normal platelet count ranges from 150,000 to 450,000 platelets per microliter of blood. Having more than 450,000 platelets is a condition called thrombocytosis; having less than 150,000 is known as thrombocytopenia. You get your platelet number from a routine blood test called a complete blood count (CBC).

I looked up the platelet range and have copied the info above. I cannot comment any more as I have PV and am more familiar with the highs and lows of the red blood cells.

But your platelets seem high at 500 and the bruising easily may indicate something. You may wish to look further into this.

[stargirluk in reply to MPort]

Thanks. My platelets being high all points to ET without the mutations. The increased bruising is due to taking aspirin while travelling, so I’ve stopped it for now. Basically seems to be early days of ET with just monitoring for the time being.

[Hidden in reply to stargirluk]

You might find that you have none of the mutations currently identified but, in the future, have some other genetic mutation. Something is causing your marrow to produce excess platelets!

[stargirluk in reply to Hidden]

Very true!

[Hopetohelp]

Good news. I too am on baby aspirin. Would be interested to see how your platelets are if you decide to stop aspirin. I know aspirin doesn’t control the number of platelets, but makes them less sticky, but since I have been on the aspirin my platelets have risen faster than before and haemocrit is a bit higher. Maybe not connected at all but would be interested to hear how you get on and good luck x

[stargirluk in reply to Hopetohelp]

I’ll let you know as I have my check ups. I’m bruising too much to keep on the aspirin for now. My legs are covered from my recent trip!

[hunter5582]

I was diagnosed with ET over 30 years ago. Progressed to PV about 6 years ago. Still alive and kicking! Despite some challenges, it has been a good and rich life despite the MPN. With your platelet levels just barely above norm and in the absence of cooccurring medical conditions, you are really low-risk. Sounds like a monitor-only protocol is the right way to go.

All the best.

[stargirluk in reply to hunter5582]

Thanks, it does sound that way. Of course, we’ll switch to doing more of my platelets go above 1000 or I have any clot issues. It’s a great result.

[smith124]

Fantastic news stargirluk ! Wishing you all the best this new year.

[Threelions]

Thanks for the update. All the best👍

[grgracey]

Oh really? When platelet count 500 aspirin not needed?

[stargirluk in reply to grgracey]

It varies from person to person. For me, I’m bruising so much that the aspirin created a problem.

[grgracey]

Thank you but I am really so afraid of getting it. I watched on videos doing bone marrow test it was horrible using those very sharp needles. Makes me really really scared. And the complications it may bring to the body after the bone have been opened a little bit.