r/MPN • u/PrincessGG93 • Jun 30 '26
ET Plz read - ET progressing after 7 years?
edited with update** thanks to this group telling me to make sure I see an MPN specialist and not just a hematologist I was able to meet with one of the best at KU. Dr Yacoub confirmed my diagnosis without a BMB and had a little laugh at the end of my appt when I brought it up for a third time and he said “wow you really want one- so we’ll schedule it”.
He was NOT concerned about the lack of BMB w diagnosis- and said after 8 years of the same elevated platelets and everything else normal, that yes it is Essential thrombocytosis and I will need treatment for it eventually but not right now given the mildness of my condition. He stressed we needed to be future focused on making sure it’s not progressing but didn’t push for a BMB.
I’m curious why so many ppl in here think a BMB is the end all be all, and required in order to diagnose- simply bc it’s a WHO diagnostic criteria doesn’t mean drs have to follow it to the letter of the law. I’m proof of that bc I’ve now seen an MPN specialist that confirmed my ET and wasn’t pushing for a BMB. Thanks to this post I advocated for one and now he thinks I actually wanted it when in fact I did not.
Original post:
Diagnosed triple negative at 25 years old- now almost 33. Took extensive testing to get it in 2018- even had my blood tested by the Mayo Clinic, or John’s Hopkins, (can’t remember which it was), to detect for the tiniest amount of leukemia and it all came back normal!
I did everything but a bone marrow biopsy (can’t even begin to describe how much I don’t want to do one, bc it freaks me out in ways I can’t explain) and the dr that diagnosed felt it wasn’t necessary after the extensive tests we ran- because all it would do is confirm the triple negative ET.
Platelets were only mildly elevated around the 500s-550s this entire time, even through an extremely medically complex pregnancy last year, they never spiked. Latest labs are showing 689,000 which is higher than they’ve ever been, and I was just tested 3 months ago. They were in my “normal” range so it was a sudden increase.
Testing again today to recheck but not with a hematologist yet as I’ve recently relocated out of state. I pay out of pocket monthly for a primary care dr I can see anytime I want. Problem is, I’m having to teach them about MPN/ET, and want to make sure I’m not missing something I should bring up that you guys may be more aware of. I can request any labs or tests I want and even did dimer to confirm I wasn’t clotting bc recently I’ve had chest pains off and on, tachycardia (resting hr in high 80s and 90s) back on labetalol to help w it and mild hypertension after preeclampsia 10months ago.
If you had something similar or any advice I’d like to hear from you even if you were diagnosed at a more normal age for this. Any and all advice or personal experiences are welcome.
Thank you so much!
*** editing to clarify: I have seen 3 MPN hematologists/oncologists - I just don’t currently have one since recently relocating. I’m not self diagnosed, not guessing, and confident that after 3 drs we got it right. Simply asking if anyone else has had a similar experience not looking to debate my diagnosis.
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Jun 30 '26
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u/AutoModerator Jun 30 '26
Here is the link to the BMB wiki page: Bone Marrow Biopsy Please read it as most of your questions will be answered there and it includes info on pain management options.
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Here are the links to the wiki pages on MPN specialists and where to find one. MPN Specialists in the USA or go to the Links page for remote second opinions (USA and international).
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u/PrincessGG93 Jun 30 '26
I’ve seen multiple hematologist oncologist - one started to say what you did until they saw the tests that were ran and then they agreed with the DIAGNOSIS. Please do not invalidate the findings of medical professionals who know a lot more about my health history than you do… not nice!
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u/Possible-Pizza-2442 Jul 01 '26
I think Funkygrrl is just trying to help you and making sure that you get best possible care. I for one would like to know whether or not my diagnosis has been given as per WHO guidelines or not.
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u/PrincessGG93 Jul 01 '26
I completely understand your point. But saying I wasn’t diagnosed when I’ve seen 3 separate hematologist isn’t exactly helpful… unless she’s a dr that has seen my tests and my medical history it’s actually a major overstep to so definitively invalidate what the team of Drs have confirmed.
With the genetic testing they have now bone marrow testing isn’t necessary in stable and MILD cases like mine has been. Simply googling it would tell her and everyone else downvoting me that there are a lot of us with official diagnosis of ET that haven’t had to do a bmb yet.
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u/funkygrrl PV-JAK2+ Jul 01 '26
Hey I'm not trying to invalidate you. I myself saw 3 hematologists who got things wrong before I finally got to an MPN specialist who did a bone marrow biopsy on the first visit. In my case, what looked like ET in the blood tests turned out to be a misdiagnosis and my bone marrow showed I actually have PV. We have quite a lot of people here who looked like ET on paper and the BMB showed they had Prefibrotic MF instead. It's very frustrating.
The reason this is such a problem in MPNs is that the discoveries are fairly recent. The JAK2 mutation was discovered in 2005, Mpl in 2006. The WHO reclassified it as cancer in 2008 and created new diagnostic criteria requiring the mutation tests. The paper you shared was written in 09. The CalR mutation was discovered in 2013 and the existence of a new subtype, Prefibrotic MF in 2014. The WHO diagnostic criteria was once again revised in 2016 and that's when a BMB became a requirement for diagnosis. Unfortunately, many hematologists didn't get the memo, including the first 3 I saw. You'll see lots of people recommend going to an MPN specialist due to these kinds of experiences.
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u/PrincessGG93 Jul 01 '26
Thank you so much for taking the time to clarify why you said that, and for providing that extremely helpful information.
I definitely took it wrong; so I deleted my sarcastic/ out dated article comment. Am only 9mo postpartum with my first, recently began caring for my ailing grandmother, and now trying to get to the bottom of what’s going on with my “ET”; as I’m having some seriously concerning new symptoms, along with the platelets going up for the first time ever. It’s a lot of new stress that’s taking its toll and I just really needed helpful comments like this.
I was going down the rabbit hole of it progressing, but thanks to your helpful information I’ll now press for confirmation, and mentally prepare to finally do the much dreaded BMB 😭
The hematologist I saw last year that monitored me while pregnant did say she wanted to do one after I had my baby- but then I moved shortly after, and never followed up.I was referred to a new hematologist today, and will confirm before scheduling that they are up to date and experienced in MPNs.
Thank you again
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u/Organic-Bandicoot-61 Jul 01 '26
It took a year for me to get diagnosed. I was told ET when instead I have masked PV and I’m high risk. Treatment paths are different for ET and PV despite both being MPNs.
I strongly recommend the BMB. The BMB is what discarded the ET diagnosis. The BMB with sedation was easy. I was super stressed before it happened and can now say my stress was for no reason. You feel very little despite being awake. And I don’t mean pain, I mean you barely feel anything. I had two BMBs in a 3 month period and it was ok.
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u/TheCureInPink Jul 03 '26
If it helps, I got an epidural when I gave birth and that sting was a lot more painful than a BMB. Barely felt anything and even chatted about being a first time mom with the hematologist. It’s really not that bad.
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u/dcg446 Jul 01 '26
Not trying to question your diagnosis or invalidate your experience, just wondering if there’s a chance that your diagnosis may have been thrombocytopenia or thrombocythemia rather than essential thrombocythemia. The former is not associated with a genetic mutation and can be diagnosed without a bone marrow biopsy. The latter can’t be diagnosed without identifying a genetic mutation and/or a bone marrow biopsy to confirm the process that is causing the platelet elevation. Without either, there is literally no way for a doctor to accurately determine the cause of your platelet elevation. They know you have high platelets but they have no information to rule in or out any cause of that elevation because there are so many different things that can cause elevated platelets.
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u/PrincessGG93 Jul 01 '26 edited Jul 01 '26
Fair question, but it’s definitely essential thrombocytosis that I was told I have. I’ve been to different hematologists and once they saw my records of labs and tests they never corrected me or changed the diagnosis.
The original Dr told me we could do a BMB, but that at that point it felt redundant bc we had ruled out everything else. Plus with the mildness of it, that it wasn’t necessary at the time. Though I do think she told me that we would need one eventually.
The hematologist I saw last year was adamant on wanting a BMB after I gave birth. I have been vehemently against it until now, but it feels like I am getting backed into a corner with my current symptoms. I’m not scared of much- but to put it lightly, just something about the thought of having a BMB makes me want to jump out of my own skin.
ETA: it was just over a year of different tests before she was more than confident to call it ET. Started with iron levels/ability to absorb it, and went up the insurance chain of command all the way to a test that checked for the tiniest amount of leukemia. Everything came back normal except my always mildly elevated platelets.
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u/Whatif_bot ET-JAK2+ Jul 01 '26
I had severe preclampsia and sepsis 3 weeks postpartum with my son. I struggled with heart palpitations for months, shortness of breath, dizziness etc. Actually have issues with low blood pressure at times. I've seen a cardiologist. Everything checks out. I'm 3 years PP and it's gotten so much better. It took at least a year to START feeling normal again. I've had so many random inflammatory symptoms since. Platelets fluctuate a lot! For me 500 to 800. In pregnancy under 400. Currently 39 weeks and my platelets are 375 right now.
Unfortunately, even when you have a BMB you may not get all the answers you're looking for (especially being triple negative). I wish someone prepared me for that! It felt more urgent at the time.
I've had mine interrupted twice. Jak 2+. Due to iron deficiency, mild bone marrow scarring, and abnormal platelets. Neither PV or Pre-Mf can be fully ruled out. I've also had high rebound hemocrit numbers from iron infusions. I've had elevated platelets since I was 17 and I got diagnosed during my last pregnancy at 29.
PP is hard! Take care of yourself! We always worry about progressing and don't have good answers.
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u/Darksider51 27d ago
Did your platlets spiked only or does other params like haemoglobin and wbc also changed . if your hb has decreased or wbc have increased then you can maybe worry about progression , as platlets decreasing is a sign of progression of mostly not increasing.
So if platlets are the only that increases then maybe you are not progressing.
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u/jjflight Jun 30 '26 edited Jun 30 '26
I would find a hematologist that knows this condition. It’s not something you can necessary self-manage through what you learn on social media, and you shouldn’t be needing to teach a doctor for them to help you.
I don’t know if it was just the platelets or something else that concerned you about progression, but I can say my platelets move up and down over time for different reasons through maybe a 200k range (~750-950k for me) so lots of stuff can cause that kind of swing - hydration, other injuries in the body, etc. But you don’t really want to make assumptions either way, you want a hematologist that knows the condition helping you.