lowered platelets

[Highplatelets]

After discovering I had jak2 mutation and diagnosed with ET five months ago my platelets have been around 600 at every monthly blood draw. I am taking aspirin only . Yesterday at my monthly lab appt my platelet count dropped to 370. Could I have been misdiagnosed and maybe my platelets were high due to something else that was going on in my body? Or does Jak2 positive / high platelets always point to ET diagnosis?

[Mostew]

What did they say at your appointment? Also what tests did you have done when diagnosed.?

Platelets do vary day by day. So it's best to see what the pattern is over several tests.

Then discuss any thoughts ,concerns you have with hospital.

Hope you feel reasonably OK.

[Steve_Essex]

hi,

A Jak2 mutation is confirmatory of a mpn, which type ie ET / PV will depend on a number of factors and mainly ascertained by a bone marrow biopsy..

There could be a whole range of reasons you had a lower platelet reading, including lab issues.. I’d wait for another couple of tests to confirm where you’re at!

Steve

[Highplatelets in reply to Steve_Essex]

You were correct about my lowered platelet count only being a lab mistake. Unfortunately, at my appointment today, they actually were 650. With me being jak2 positive, the doctor says I am taking a huge risk by refusing the hydrea. I am torn with what to do. I have read that hydrea can cause other cancers and I feel fine now. I am planning to just continue my aspirin for a month and return for more bloodwork

[Steve_Essex in reply to Highplatelets]

hello, have you had a risk classification and a formal diagnosis of ET / PV…. Your platelets are still low and could potentially be managed by aspirin… if HCT above 45%. You’ll likely also need venesections… have they done a red blood cell mass test as this will help determine if you potentially have PV….

Personally I wouldn’t touch Hydrea and push for an interferon based therapy as a first option..

[Highplatelets in reply to Steve_Essex]

The only info I was given was that my platelets are high and I have jak2 mutation( the paperwork says 12% allele burden). They said everything else looks good. They said anything above 600 platelet count needs hydrea. For now, I am not listening and chancing just aspirin and healthy diet

[Otterfield in reply to Highplatelets]

You don't say how old you are. It's often considered sensible to take a cytoreductive drug once you reach 60. Like many drugs, Hydroxycarbamide can make you vulnerable to other illnesses but many of us were on it for many years (16 in my case) with no or few ill effects. There are alternatives, such as Pegasys, but that doesn't suit everyone.

[Highplatelets in reply to Otterfield]

I am 47. Perfect health (until this was found on routine bloodtest). I still jog everyday. I guess they say the jak2 positive puts me at greater risk? I would love to just take aspirin.

[Steve_Essex in reply to Highplatelets]

I’m 41, PV.. hct 45 - 46% platelets 850-1000 and low risk at guys hospital and currently on daily aspirin and 3 monthly venesections…

[Otterfield in reply to Highplatelets]

At age 47 I'm surprised that your haematologist is so insistent. I suggest that you would benefit from seeing an MPN specialist, as general haematologists may not be in the best position to advise you.

[pianolessons]

I just joined this community and I am close to your age but with platelets around 450-500. I wouldn't take Hydrea since you are young and physically active/fit otherwise. My doctor said that if my trends continue the same, they would put me on Hydrea only after I turn 60.