Essential thrombocytosis : I have been dx with... - MPN Voice

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Essential thrombocytosis

Kimsteff profile image
6 Replies

I have been dx with essential thrombocytosis. I have went for a year with a high wbc of 12.44 (or higher) and platelets of 513 (or higher). I have had a bone biopsy and it came back no cancer. I also run a low grade fever of around 99.8 every day. My joints ache all the time. My oncologist said I'm fine and take an aspirin. Can anyone help me out?

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Kimsteff
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6 Replies
Pinkandgreen profile image
Pinkandgreen

Have u been tested for any autoimmune diseases? What about rheumatoid arthritis? Do you have a regular GP that can run some testing for you?

Kimsteff profile image
Kimsteff in reply toPinkandgreen

No, no one has sent me anywhere for another evaluation.

Chaz1 profile image
Chaz1

Sorry, confused did your biopsy not confirm your diagnosis? If it has confirmed your diagnosis and you are under 60 with no thrombotic events then the course of action would be to take low dose aspirin and to be monitored every few months.

It could be that other things are causing your low grade fever so have some checks completed for why this might be. Platelets aren't dramatically high, particularly if they have dropped down a bit that is good. WBC is a tad high but with both high but reducing it could suggest an infection has been battled. I'd definitely have another blood test in a month or so to see if they have reduced further & hopefully the fever will subside as well. Unfortunately at the moment doctors aren't do many tests & appointments so you might have a bit of a wait for more tests.

Kimsteff profile image
Kimsteff in reply toChaz1

My bone biopsy did confirm ET.

Mazcd profile image
MazcdPartnerMPNVoice

Hello Kimsteff, I would suggest you read the information on our website about ET, this might help you

mpnvoice.org.uk/about-mpns/...

Best wishes, Maz

hunter5582 profile image
hunter5582

Too little information to really give you an answer. Given the fever, it sounds like some sort of chronic infection that your body is trying to fight. That would explain elevation in leukocytes. Perhaps something else going on with your immune system. Since you had a BMB that ruled out PV and confirmed ET, you may need to monitor for a while to figure out what is going on. Glad to hear that it ruled out any additional cancers beyond the ET. What driver mutation were you told was present? Did you hear a reference to the mutant allele burden?

It is a challenging time to have to be following up on all this in a healthcare system that is overwhelmed with the COVID 19 crisis. Hang in there and be persistent in trying to sort this out.

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