Scared 😒

[faith949]

I’ve had high platelets since 2016 after a fall one night I fell and hit the back of my head lost my sense of smell after that as well then I went to emergency room again for nausea few weeks later and they drew my blood and said my platelets are super high and admitted me to the hospital I’m 35 and I never had any serious health issues before this. I go to uci hospital and see an oncologist/ hematologist and she still can’t find an answer. Done the bone marrow biopsy twice and was normal thank god but nothing seems to bring my platelets down and I’m really scared not sure what to do next or if I should see another doctor this has been taking a toll on me for awhile I’m frustrated and scared I hope someone out there has some answers or can relate because I’m at my breaking point 😔

[Mazcd Partner MPNVoice]

Hi Faith, I am not surprised you are scared and frustrated, I think it would benefit you to get a second opinion, especially as you don’t have a definitive diagnosis. Best wishes, Maz

[hunter5582]

I was diagnosed with ET in my early thirties. I am now 63 and have never had significant issues due to the thrombocytosis. Most of the time, I have been on aspirin-only. I have actually had more trouble with the secondary MPN symptoms, not the platelet-level issues per se. My platelets have fluctuated between Low 500s to mid 600s for decades. No issues. Have popped up a bit higher due to reactive thrombocytosis following illness or surgery. Have been on hydroxyurea a few times, but never longer than a year. About 6 years ago the ET progressed into Polycythemia. The doc at the time missed it and I did not get diagnosed until about a year ago. I am JAK2+ PV now. The good news is that my JAK2 mutant allele burden is low at 25% - thus my milder presentation of symptoms. A few thoughts for you as you start down this journey. Many docs, even hematologists, rarely if ever see/treat MPNs. It is really important to find an MPN expert doc - if not to treat - at least the consult on your case. I found an MPN expert at this patient recommended list of MPN docs mpnforum.com/list-hem/ . It is worth a trip, no matter how far, to consult at least occasionally with a true MPN expert. There is a lot of really great research and progress being made on MPNs. Information about the role Inflammatory Cytokines play in MPNs (for JAK2+ MPN), the role of the JAK2 mutant allele burden in course/prognosis, and the role of non-driver mutations (e.g.TP53, ASXL1, IDH2) in the severity of the disease process to mention a few. The thinking about treatment for ET and PV is also evolving. Some expert MPN docs are moving away from "sanitizing" blood cell numbers and focusing more on responding to symptoms in determining treatment. Research shows the risk of thrombosis does not directly correlate with your platelet level below 1 million. Some research shows that for PV patients, leukocytosis correlates more positively with risk of thrombosis than platelet levels. If your platelet levels get too high, you may actually be at risk for bleeding - not clotting (see Acquired von Willebrand Disease). Depending on what your platelet levels actually are, you should have already received a von Willbrand panel (blood test). I certainly have experienced what it is like to try to wrap your head around having a form of blood cancer - how scary it is - and how hard it is to get answers. Be assured, there are answers. You can gather the information you need to educate yourself and make good decisions about your own care. The vast majority of us with MPNs live long lives, albeit with some challenges, but this can be dealt with. Keep checking in here. There is a lot of great support, information and understanding form other people going through the same thing. All the best to you on this journey.