ET OR MYELOFIBROSIS

[Johan2021]

Hi! I am new to this. You guys Who have ET, did you have any raising levels in LDH? Or anything else other than high platelets?

How is the prognosis with prefibrotic myelofibrosis? Do everyone get myelofibrosis?

Thank you!

[BeHealthy1986]

Hi, do you mean lactate dehydrogenase?

[Johan2021 in reply to BeHealthy1986]

Yes

[BeHealthy1986 in reply to Johan2021]

One time high doesn’t mean much. How is your whites? Did you have BMB?

[Johan2021 in reply to BeHealthy1986]

WBC 8.8No bmb, my hematologist says it is not necessary? Im scared of pre-mf

[BeHealthy1986 in reply to Johan2021]

That’s a good sign. Listen to your doctor. If you really want to know if ET or pre-PMF, push for a BMB.

[Johan2021 in reply to BeHealthy1986]

Do you know the prognosis for CALR pre-mf?

[BeHealthy1986 in reply to Johan2021]

CALR patient seems have the best prognosis. In fact the treatment between low risk true ET and pre-PMF are different for some MPN specialists. Long acting interferon like Pegasys or Besremi (FDA pending, EU approved) could reverse early fibrosis, and bring hematological and molecular remission for some patients, not everyone.

[Johan2021 in reply to BeHealthy1986]

Thank you! How high was your LDH?

[BeHealthy1986 in reply to Johan2021]

162, 136, 135 in the last three blood work. The reference range is 130 - 250 for the hospital.

[Johan2021 in reply to BeHealthy1986]

Ok!

[Mazcd Partner MPNVoice]

hello Johan2021, welcome to our forum. Has your haematologist told you that you are pre-MF, check with your haematologist about your diagnosis to ask if you are pre-MF.

I would urge you to read as much as you can on our website mpnvoice.org.uk about ET, I am sure it will help you understand it better. It is also a good idea to write down your questions for your next appointment with your haematologist, it is easier to write them down and then you won't forget to ask something important. The main questions are: what is your diagnosis; do you have any of the mutations i.e. JAKII, CALR; what is the treatment plan going forward; will you be prescribed any medication.

It is very scary when you are first diagnosed, we all understand how you are feeling, we are here for you. Best wishes, Maz