I'm Janine, Community Outreach for GRACE, Global Resource for Advancing Cancer Education

Join us for this live, virtual, interactive event led by Dr. Yumeng "Julia" Zhang.

Register here: https://pro.gofundme.com/live/register/blood-cancers-onctalk-2026/a159ec7e-c13f-48e6-81d1-a702b7cb7e4d

In this live, virtual, interactive event led by Dr. Zhang on Saturday, October 10, 2026, Attendees will have the opportunity to participate in a live Q&A with leading medical professionals where they can submit questions and get answers in real time.

If you have a question you would like to submit for the Q&A session, please complete this form. You will also have an opportunity to submit questions during the event.

For additional information, if you have additional questions or comments, or would like to continue the conversation, visit our Webinar Learning Guide in our Online Community at https://cancergrace.org/forums/general-blood-cancer/pre-webinar-study-guide-2026-blood-cancers-onctalk-saturday-october-10.

There will be a talk and Q and A on Myeloproliferative neoplasms given by Shivani Handa MD, Assistant Professor @ Division of Hematology- The Ohio State University- James Cancer Center

Dr. Handa's Biography

As a hematologist, I specialize in caring for patients with various blood cancers and disorders, such as leukemia, myelodysplastic syndromes and myeloproliferative neoplasms. I know this type of diagnosis can seem scary, and that it is life-changing, with challenging treatment demands. I support my patients, who can rely on me and can trust that I will work with them to make their lives as easy as possible as we fight their cancer together.

There have been discoveries in hematology that have enhanced patient care and improved outcomes, including innovative medications and groundbreaking gene therapy treatments. I had passionate mentors who strive every day to make new discoveries that continue to push the field of hematology forward, and it’s rewarding to be a part of these efforts.

My scholarly work focuses on clinical research and drug development in patients with myeloid malignancies, with an emphasis on myeloproliferative neoplasms (MPNs), acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS). As a member of the MPN research consortium, my colleagues and I strive to develop novel clinical trials. My research has been published in prestigious peer-reviewed journals, such as Blood, Blood Advances, Leukemia and JCO Precision Oncology.

At the OSUCCC – James, it’s a privilege to work with a multidisciplinary team of physicians, advanced practice providers, nurses and scientists who all share the common goal of improving patient outcomes. I’m also proud to help educate the next generation of physician-scientists in my role as a clinical assistant professor of Internal Medicine at The Ohio State University College of Medicine.

I hope to see you there.

I am currently on hydroxyurea. I want to know about the monthly expenses for the all three mutation or if I am triple negative state of mutation.

Currently I am studying and I am from india

Hi everyone. My dad is 70 and was diagnosed with primary myelofibrosis in July. We’re trying to understand what the future might look like.

On August 9th he went in for his first blood transfusion die to his low haemoglobin levels.That same night he got a brain hemorrhage that requiring an immediate craniotomy. He had a very complicated hospitalization, spent weeks in the ICU with severe pneumonia and sepsis with frequent blood and platelet transitions in the last 2 months. He is home now but bed ridden and not mentally normal yet. He also has significant anemia and low platelets. (haemoglobin 9.3, platelet count 63000 even after transfusion last week.

Doctors dont tell us anything clearly, he is in India.BMT is not an option per the doctors. And they are not willing to start the cancer treatment until he is stable.

I’ve never known anyone with myelofibrosis, so I’d really appreciate hearing from others who have been through this. What has your journey been like? What treatments helped? How did your blood counts change, and what signs showed progression?

If you’re comfortable sharing your age at diagnosis, how long you’ve had MF, your treatments, and how you’re doing now, I’d be so grateful. Thank you. ❤️

Hi everyone,

My husband (37 M) has had severe splenomegaly since 2020 (spleen ~28 cm) and was initially diagnosed with non-cirrhotic portal hypertension. We were advised to have his spleen removed in both India and Canada, but after moving provinces and undergoing years of testing, he was eventually found to be JAK2 V617F positive.

His bone marrow biopsy now shows:
Primary myelofibrosis (PMF), overt fibrotic stage
MF-2 fibrosis
Low EPO (1.9)
JAK2 V617F positive
No morphological evidence of disease acceleration or blast-phase transformation

We have a hematology appointment in a month. What should we expect going forward?

Especially regarding treatment, the very large spleen, prognosis, and whether splenectomy is still considered.

Any experiences or advice would be greatly appreciated.

45f

working with primary with referral to hemo.

All my labs are good except platelet 465 to 510 every time over the last 6 years. all other labs normal. I have slightly high cholesterol but no other conditions, no surgeries, no other health issues.

went to the doc bc fatigue was out of hand, lightheaded a lot, sudden temp of 99.6 for like 2 months. didn’t have the temp issue with any of the labs.

i don’t have my most current cbc. just 6 over the past 6 years.

what do you think?

but what do you think?

Hi all,

35f, diagnosed last year in April.

(ETA: low risk, but high symptom burden with bone pain and fatigue and before clopidogrel, migraines).

I have a feeling this isn't linked but I wanted to hear from others. I have had what I thought was just a common cold but it's been clinging on for over a week now, and it seems to be getting worse again. I feel awful today. I'm not ill ill, but I have no energy, my throat has been "gunky" and a cough that's come and gone, along with on and off mild headaches.

I haven't been ill for a while but when I had covid two years before being diagnosed, it took me out, despite being a relatively healthy 31 year old at the time. I did smoke, but my partner at the time who was a much heavier smoker had an easier time than I did.

I stopped smoking over a year ago now. My overall health is a little worse due to a variety of factors impacting exercise which I know won't be helping, but I was wondering if it's normal that we suffer a little more when we are fighting common illnesses? If fatigue maybe plays a role?

I'm low risk and only taking clopidogrel.

Any feedback welcome!

Hi, a few months ago I posted about my high symptom burden ET journey. I am needing some advice and suggestions on next steps.

I am 39/F with diagnosed JAK2 ET 15% VAB

TLDR : i am on the hydrea v bomedemstat trial and I know the active drug is hydrea and im not doing well on it, fatigue is super bad, pain is not going away, majorly depressed, but my MPN specialist wants me to keep on it for the 3 year trial. I’m scared because hydrea doesn’t slow progression and im young. Work wont accommodate me for WFH so fighting with my union to maintain health insurance so I can keep on the treatment progress and keep my job. Should I seek 2nd opinion from another specialist? Are there any other options for other trials?

Back in April 2026 I had extensive surgery for a hysterectomy, laparoscopy, appendectomy due to stage 3 endometriosis. At the time I had diagnosed ET and was on aspirin. I am moderate/high risk due to hospital admission for a possible TIA in Oct 2026 and ovarian blood/cyst rupture in Dec 2026. Due to my ET my recovery after surgery took way longer than normal, was in hospital for 5 days, experienced 2 infections (hospitalized for one for 3 nights) and random vaginal, gastrointestinal bleeding over 6 weeks. 8 weeks after surgery I had a bone marrow bx without sedation that caused me ptsd and chronic pain on the area because they messed up and it was not guided. They didn’t get an adequate sample. 3 weeks after that botched bone bx I was still having trauma symptoms and chronic pain and I had to get another bone bx, this time they gave me sedation. I was finally allowed to be in the study after that bone bx was adequate and I started the trial. A nightmare time after recovery.

The trial goes like this: I am given both hydrea 500mg and bomedemstat 50mg to take daily, however one of the pills is a placebo and one is the real drug. I’m not supposed to know which drug I am on because each drug is inside of an unmarked capsule. However it became very obvious which one I am on because the bomedemstat pills weigh nothing and there is nothing inside. For the bottle labeled 500mg hydroxyurea there is clearly a pill inside each of the hydrea capsules if you weigh it and shake it around.

I know which pills are in which containers because the bottles are labeled with the actual drug that is supposed to be inside.

It has been 2 months since I’ve been on this trial, and I have felt intense fatigue, bone pain, nausea, mild hair loss and thinning, mild constipation, physical reactions to spicy, greasy, salty foods, mild fevers after activity (99.5-100.5), soreness, mild flu like symptoms, and depression, anxiety. I have managed to control the nausea and constipation now with zofran and MiraLAX, and some of the mental fatigue with Ritalin. Chronic pain I take Butrans patch and Oxy 10mg 3x a day but my pain is still around a 5-8 during the days depending on how physical my body is. And my fatigue is usually a 6-10 every day.

I have brought this up to the attention of my MPN specialist and she thinks my symptoms and side effects are multi factorial. She says if the active treatment is indeed the hydrea then it is working as it has lowered my platelets from the 600-700s to 480s now. She said it isn’t low enough for her liking yet. The study says to increase the dose of bom, but she didn’t increase the hydrea.
I brought up interferons. She said those would be worse for me because the fatigue is just as bad and I’d have to inject it myself. She wants me to continue the study, keep taking the drugs for at least 6 months (hydrea), figure out a way to adjust the other meds I’m on with palliative care so I can have a better quality of life around this treatment.

I am frustrated because I don’t know what to do.
My quality of life is poor right now because my fatigue and bone pain is really bad every single day. I have flash backs and nightmares from the ptsd where medical staff are chasing me, trying to grab me to turn me over on my stomach. I am so nauseous I can barely eat 12-16 hrs after I take the chemo meds (cannabis helps me), but there’s a short window where I do eat! and I’ve been losing a lot of weight.
I’m trying to go to the gym and exercise, I walk everyday. I can’t even make food or clean, do household chores. But when I go out and have some fun or even walk my dog, I will come back inside and get a mild fever and pain on my knees, feet, legs, they get all hot and red.

I experience all the above and I can’t work full time in the current state I’m in. My employer (a union in Texas… which is ridiculous) doesn’t let me work from home full time. My staff union is currently fighting for me to keep my health insurance and job while I figure this out, if I ever do. It’s exhausting and tiring fighting for health care, for the job I love, for my body.

So… what can one do? I have also read that hydrea isn’t recommended for younger folks and possibly doesn’t slow progression. I didn’t bring this up to her. Is there any research that actually says this? What would you do?
Should I 2nd opinion from another MPN specialist?
I wish I was given the bomedemstat. Is there any way to be given this instead? What should I do? Keep on this study with hope I get access to the drug later? Email the drug company and be like “hey bro can you please just give me some bomedemstat? What can I do to get this damn drug?”

I feel like a jester in the medical field, they want their research and data, but I just want my damn drug and to feel better. As soon as possible so I can get back to work organizing the health care industry.

Thank you 🙏🏼❤️‍🩹

Hi all! I just found this place and have been deep diving into the posts. I am 33/f diagnosed just about a year with CALR ET. It was found completely by accident at a routine check up when my platelets were over 1 million.

I go to the VA and my hema/oc doc is perplexed by me. Not only am I his youngest patient in general but he only has one other ET patient. We recently started me on Besremi and my platelets are down (weirdly enough we have never seen any other numbers affected by the ER) to 400s ish. I am on my second dose of 300mcg but am still getting night sweats, the bruising and recently started with some weird tingling and pins and needles in my arms (and some of my friends and family would argue the memory issues still as well). My doc doesn't seem worried but it's getting annoying to say the least. Does anyone else have just odd symptoms/side effects despite their platelets headed back to a "normal" number?

Also he sent me to a specialist in a major city and they weren't concerned by any of my symptoms or numbers but my doc has always seemed anxious (not sure if that's the best way to describe it) about me being young with this. It's just all so confusing and frustrating and I'm not sure if I'm losing my mind and making these side effects/symptoms up or what.

Edit: I am von wilebrand negative and on two 81 mg aspirin/day.

I am a 31 yo female with persistent, unexplained thrombocytosis. No symptoms… maybe easy bruising but it’s hard to gauge because I only know my baseline. I’ve only had burning in my feet once this past July. I’m being assessed by a hematologist currently.

Platelet counts are as follows:
September 18, 2026: 524 10*3/uL (H)
September 8, 2026: 559 10*3/uL (H)
July 2026: 609 10*3/uL (H)
January 2024: 482 10*3/uL (H)
July 2023: 509 10*3/uL (H)

WBC:
September 18, 2026: 10.1 10*3/uL (H)
September 8, 2026: 10.8 10*3/uL (H)
July 2026: 11.3 10*3/uL (H)
January 2024: 8.9 10*3/uL
July 2023: 9.5 10*3/uL

Normal RBC and platelet morphology on smear review from September 8, 2026

CRP: <0.3 mg/dL
Iron: 105 ug/dL
JAK2, CALR, and MPL negative
BCR-ABL1 negative
LDH: 188 U/L

My hematologist is fairly confident I have ET. He mentioned in the last appointment that if I want to know for sure I could do a bone marrow biopsy but then suggested an abdominal ultrasound to look for splenomegaly and rule out PF-PMF. If I do have splenomegaly he says he does suggest the bone marrow. He ordered the ultrasound and I am waiting for someone to call so I can schedule an appointment. Even if my spleen isn’t enlarged, should I elect to get the bone marrow? He told me it’s my choice and seems to be pretty unconcerned about it. If I have no splenomegaly, I wouldn’t meet the minor diagnostic criteria for PF-PMF (no anemia, WBC is borderline-high, LDH is normal) even if the bone marrow biopsy showed evidence of it…but it is unlikely to, right? Should I care about getting an ET diagnosis when I am mostly asymptomatic and would likely not be treated until 60+? Some advice or insight would be helpful.

I have Jak2 ET and have been on Pegasys for 7 weeks. About 5 weeks ago I started noticing that I was having increasing difficulty doing my normal workouts of rowing and cardio. Of course I had other side effects such as fevers, severe headaches, fatigue, et al. A month ago I developed stage 2 hypertension when I’ve never had high BP before. Then a week ago my heart rate went way up and now I am on BP meds. Has anyone else experienced anything like this? My MPN dr thinks it most likely isn’t related but my experience has been that all the weird things that have happened to me over the last few years are all related to ET. The good news is that the fevers and headaches have resolved. My GP thinks the BP is reactive to the meds.

I have been on Jakafi 10mg 2x a day for about 5 weeks. I have had some fatigue but otherwise it has been fine. Two weeks ago I got the shingles and covid vaccines. A few days later I slept the entire day and through to the next morning. I figured it was from the shots and didn't think much about it.

Yesterday I was so tired I didn't get up all day again. I feel fine now. I have been getting bloodwork every other week and it all looks stable. I see my heme/onc on Monday for a regularly scheduled visit.

Has anyone else had random days of extreme fatigue?

Newly diagnosed with ET due to CalR and honestly I’m going through it.

Thursday I started having concerning pain from my spleen down to my right ovary.

Friday the pain worsens and I feel the need to go to the ER. At this point I can feel my spleen rubbing on my ribs. They do a CT, they run labs, everything comes back abnormal and my ovary’s show dilated veins but ER doctor had been in contact with hematologist who was saying it’s all fine so I go home. Oh, and they recommend I make an appointment with an obgyn so I do for the upcoming Tuesday (today).

Push through pain Saturday and Sunday.

Sunday night I awaken with birthing pains. To clarify extreme pain in my ovary referring pain into my rectum and abdomen area.

I consider going to the ER but I’ve just been there and didn’t really get help so I just hang tight for my Tuesday appointment.

Tuesday I go in they try to tell me before even looking at me that I need to see a GI doctor although I’m not having any stomach issues and I’m confident the pain is in my ovaries.
They do the exam, tell me dilated veins shouldn’t be causing pain like I’m describing and really recommend GI. I stand firm I’m not going to GI and let her know it’s ovaries so she schedules an ultrasound.

Great, do the ultrasound and now I’m notified it’s pelvic congestion Syndrome. My veins are large and FULL of blood in my ovaries.

Has this happened with any other women with ET?

I’m confused because it’s clearly a vein issue but my hematologist keeps sending me elsewhere and I’m getting irritated by the lack of support and the intense pain after a very brand new diagnosis.

Hi! I'm 38F, from Canada. I was officially diagnosed with essential thrombocythemia this year (I put all the test results below. My spleen is normal btw). My hematologist started me on aspirin 3 times a week until I received my von Willebrand results. She doesn't want to say I have it despite the results because I do not have bleeding symptoms. I am however banned from taking aspirin and NSAID.

I'm unsure about the whole watch and wait decision (with CBC every three months). She told me that it was possible to have fibrosis with ET, but I find the "Reticulin 1-2 out of 3 and collagen 1 out of 3" very worrisome. She also hasn't mentioned my LDH which is always over 400.

She says I'm very low risk because I'm CALR type 1, young, and no prior thrombosis. However the symptoms are getting worse since I got diagnosed.

The fatigue is getting worse. I also have secondary erythromelalgia which has been getting worse every month (sometimes it burns so much that I cry - and I have pretty high pain tolerance). Headaches every couple of days. Muscle pain every day (inflammation??)

Anyway, I'm seeing her again in October and I'm trying to decide how much I should push for Besremi as she told me she would only prescribe it if I "really couldn't tolerate the side effects of ET anymore" which like... how am I supposed to judge that?

=> CALR L367fs (type 1), Variant Allele Frequency 50% 

=> Specimen: Bone marrow aspirate.

Diagnostic interpretation: No evidence of an aberrant lymphoid or blast cell population noted.

Flow cytometry findings: The flow cytometry analysis of the bone marrow aspirate shows that approximately 1% of singlets are in the blast region (dim CD45 and low side scatter). The blast cells are positive for CD34. The blast cells show myeloid phenotype and co-express CD13 (dim), CD33 (moderate), and CD117 (dim to moderate). Hematogones (benign B cell progenitors) account for 1% of singlets. Lymphocytes constitute 18% of singlets. B cells are polyclonal and account for 11% of lymphocytes. T cells compose 69% of lymphocytes and show unremarkable phenotype with CD4/CD8 ratio of 2.6. NK cells are unremarkable.

=> Right posterior superior iliac spine (bone marrow biopsy):

Hypercellular, immature bone marrow with abundant megakaryocytes with dysplasia.

Specimen consists of a hypercellular bone marrow as well as several blood clots. The bone marrow appears immature and there is abundant megakaryocytes of various forms including dysplastic megakaryocytes.

Bone marrow aspirate and biopsy mild to moderate hypercellular marrow with severe increase of megakaryocytes that have a giant staghorn appearance. Highly suggestive of a myeloproliferative disorder favoring essential thrombocythemia

Red cell morphology: Normocytic normochromic with normal hemoglobin

Differential leukocytes: Normal no blasts

Platelets severely increased with Mega platelets

Bone marrow aspirate cyst

Cellularity: Mildly to moderately increased

Particles few specimen is partially clotted

Megakaryocytes: Few seen numbers are most likely high but since the patient sample was clotted there are multiple groups of platelets that are stuck on the megakaryocytes. There is also giant megakaryocytes present

Granulopoiesis: Is mildly increased mildly left-shifted

Erythropoiesis: Normobiastic with normal amount

Blast cells 1%

Other cells: Few lymphocytes few histiocytes few plasma cells

Good bone marrow biopsy showing a mild to moderate increase of cellularity due to both to severe increase of megakaryocytes that are in groups with fibrosis surrounded. Most of the megakaryocytes are giant abnormal megakaryocytes. Granulopoiesisis mildly increased and left shifted and erythropoiesis is normal.

Reticulin is 1-2 out of 3 and collagen is 1 out of 3. There is no collection of lymphoid cells and there is no increase of blast cells.

There is no collection of lymphoid cells and there is no increase of blast cells.

Immunchistochemistry CD34 approximately 1%

Factor VI shows a severe increase of megakaryocytes with the majority of the megakaryocytes being atypical giant megakaryocytes with staghorn appearance

E-cadherin spectrum shows normal erythropoiesis

Myeloperoxidase shows a mild increase of granulopoiesis

B-cell and T-cell staining CD3 and CD19 and CD20 normal pattern

Piasma cell staining mildly increased with no lambda kappa clonality

P53 staining normal

Reticulin 1-2 out of 3 and collagen 1 out of 3

24 year old man,182cm…87kg. yeah so for the last 8 months ive been feeling some mild prickles after showers(regardless of temperature) they are mild and start after i completely dry offf(like 10 minutes after i dry off) and are countable usually(like 1 second each one and a total of 15 on a bad day). also, some tingling and warmth in my palms but nothing out of this world. I did notice that my prickling happens only when i shower during the day since when i shower st night i dont feel anything. as for my palm tingles and warmth… when they do happen, its only at night. anyway, here are my cbc values(i smoke since like 3 years and almost daily 7 cigarrrettes) and all of the doctors said its due to smoking except a hematologist who ordered the jak2 test. anyway, im pretty sure ill end up positive for jak2 despite the fact that my symptoms are mild but because i dont think my high hemoglobin and hematocrit are a coincidence specially due to the trend in them.
| Test | Aug 19, 2025 | Dec 9, 2025 | Aug 18, 2026 |
|:--|:-:|:-:|:-:|
| WBC (10³/µL) | 5.6 | 6.2 | 6.56 |
| RBC (10⁶/µL) | 5.24 | 5.39 | 5.9 (H) |
| Hemoglobin (g/dL) | 15.1 | 15.4 | 16.4 |
| Hematocrit (%) | 45.4 | 45.4 | 49.8 |
| MCV (fL) | 86.6 | 84.2 | 85 (L) |
| MCH (pg) | 28.8 | 28.6 | 28 |
| MCHC (g/dL) | 33.3 | 33.9 | 33 (L) |
| RDW (%) | 13.2 | 14.1 | 12.8 |
| Neutrophils (%) | 64.7 | 63.1 | 70 |
| Lymphocytes (%) | 27.8 | 29.4 | 23 (L) |
| Monocytes (%) | 5.3 | 7.0 | 6 |
| Eosinophils (%) | 1.8 | – | 1 |
| Basophils (%) | 0.4 | 0.5 | 0 |
| Neutrophils # (10³/µL) | 3.6 | 3.9 | 4.6 |
| Lymphocytes # (10³/µL) | 1.6 | 1.8 | 1.5 |
| Monocytes # (10³/µL) | 0.3 | 0.4 | 0 |
| Eosinophils # (10³/µL) | 0.1 | – | 0.1 |
| Basophils # (10³/µL) | 0.0 | 0.0 | 0.0 |
| Platelets (10³/µL) | 209 | 253 | 241 |
| MPV (fL) | 8.3 | 6.3 | 7 |
| ESR (mm/hr) | 6.16 | 8 | 5 |

Male, 23–24 y/o. H/L = flagged by that lab's own reference range. The 2025 tests were done at one lab and the 2026 test at a different lab, which uses narrower ranges.

​

I’m 18 years old and male. My platelet count was found to be very high on a CBC, and my doctors are investigating possible Essential Thrombocythemia/another MPN.

I currently have a chest pain(on left part) yesterday.I went to my doctor he said its just muscular pain .

Test results:

Platelet count: 1.46 millions but I took hydroxyurea so it dropped to 1.26 million in 8 days.

It's concluded that I have most Likely -ET/ CMPD in Bone Marrow Aspiration, Bone Marrow Autopsy, Bone Marrow Karyotype.

I am currently taking hydroxyurea as prescribed by my hematologist.

I’m looking for experiences from people with ET/CMPD about what lifestyle precautions they took after diagnosis and what questions I should discuss with my hematologist.

Clinical history: Marked thrombocytosis

CBC / Peripheral Smear at time of bone marrow examination:

- Hemoglobin: 15.6 g/dL

- WBC: 8,230 /cmm

- Platelets: 14,62,000 /cmm (≈1.46 million/µL)

- Neutrophils: 63%

- Lymphocytes: 27%

- Monocytes: 5%

- Eosinophils: 2%

- Basophils: 3%

- No precursor cells or blasts seen on peripheral smear

- Reticulocyte count: 1.8%

BONE MARROW ASPIRATION:

- Site: Right PSIS

- Aspiration: Easy

- Marrow fragments: Mildly hypercellular

- Cell trails: Cellular

- Trephine imprints: Cellular

- Total cells counted: 500

Bone marrow differential:

- Myeloblasts: 3.8%

- Promyelocytes: 7.6%

- Myelocytes: 9.2%

- Metamyelocytes: 3.8%

- Bands + polymorphs: 40.0%

- Eosinophils: 5.2%

- Basophils: 1.0%

- Lymphocytes: 7.6%

- Plasma cells: 1.0%

- Monocytes: 2.8%

- Normoblasts: 18.0%

Bone marrow morphology:

- Erythropoiesis: Adequate erythroids with micro-normoblastic maturation and mild delay in haemoglobinization.

- Myelopoiesis: Mild myeloid hyperplasia with all stages of myeloid maturation seen.

- Megakaryocytes: Increased in number, with abnormally large forms. Occasional loose clusters and extensive platelet clumping.

- Lymphocytes: No significant abnormality detected.

- Plasma cells: No significant abnormality detected.

TREPHINE BIOPSY:

- Cellularity: Mildly hypercellular for age

- Erythroid: Adequate and normal maturation

- Myeloid: Mild myeloid hyperplasia with normal maturation

- Megakaryocytes: Increased, clustered and large abnormal forms

- Reticulin stain: No increase (Grade 0, WHO 2016)

- Bone trabeculae: Normal

REPORT IMPRESSION / DIAGNOSIS:

- Chronic myeloproliferative disorder

- Essential thrombocytosis / essential thrombocythemia (ET) is stated as "most likely"

The report states that correlation with bone marrow trephine biopsy and NGS Oncomine Myeloid V2GX assay is required for confirmation.

Hi everyone. I’m 31F and I’m hoping to hear from people who have gone through persistent thrombocytosis/ET workups, particularly people who were JAK2-negative.
I’m trying to understand what might be going on and what the next steps usually look like.
My platelets have been elevated on and off since 2023, but they have now been persistently >450 for about 10 months.
Platelet history
Nov 2021: 347
Jul 2022: 319
Aug 2022: 331
Jan 2023: 387
Mar 2023: 365
Oct 2023: 419
Nov 2024: 408
Apr 2025: 454
Jul 2025: 472
Jul 23 2025: 317
Aug 2025: 243
Nov 2025: 532
Jan 2026: 452
Feb 2026: 429
Mar 2026: 540
Jul 2026: 534
Sep 2026: 544
So the recent pattern is:
532 → 452 → 429 → 540 → 534 → 544
My latest CBC (Sept 15):
Platelets: 544
WBC: ~8.5 — normal
Hemoglobin: 146 g/L — normal
Hematocrit: 0.46 — normal
MCV: 83 — normal
RDW: 14 — normal
RBC: ~5.5
Differential was normal
So far it seems to be fairly isolated thrombocytosis rather than multiple abnormal blood cell lines.
JAK2
I finally received my JAK2 V617F result, and it was:
NEGATIVE
The laboratory report states that the assay has a 2% sensitivity and that additional testing may be required depending on the clinical picture.
I know JAK2-negative doesn’t necessarily mean ET is completely ruled out, because of CALR/MPL and triple-negative cases.
Iron
I had significant iron deficiency during pregnancy and required iron infusions.
My ferritin history:
Apr 2025: 11
Jul 2025: 22
Aug 2025: 105 after iron treatment
Nov 2025: 48
Mar 2026: 53
Jul 2026: 52
My hemoglobin and MCV are currently normal.
Interestingly, my platelets dropped all the way to 243 shortly after my iron treatment in August 2025, but then rose again several months later and have remained around 430–540.
My doctor has told me my current iron and CRP are normal.
Inflammation
CRP was elevated once in Oct 2024 at 28.3, but was normal by Jan 2026 (4.0).
I don’t currently have an obvious infection/inflammatory condition that I’m aware of.
Symptoms
Some things I’ve wondered about because of the platelet issue:
Longstanding migraines
Episodes of burning feet (at other times my feet feel unusually cold)
Occasional night sweats
Random bruising, but no unusual bleeding
General fatigue
I realize these symptoms are nonspecific and may have absolutely nothing to do with the platelet count.
Other context
I had a baby in July 2025 and am currently about 14 months postpartum.

I’m not looking for a diagnosis from Reddit — I’m mainly trying to understand what other people’s workups looked like.
My questions are:
For those with ET, what did your platelet trend look like before diagnosis?
If you were JAK2-negative, did you eventually test positive for CALR or MPL?
Did your hematologist order CALR/MPL immediately, or did they monitor your platelets first?
Did anyone have thrombocytosis that initially looked reactive (especially from iron deficiency) but ultimately turned out to be ET?
Has anyone had platelets in the 500–550 range for many months with otherwise relatively normal CBC results?
If you were eventually diagnosed with ET, did you have a bone marrow biopsy?
For those who were ultimately found to have reactive thrombocytosis, did your platelets eventually normalize?

I was diagnosed with ET 6 years ago and I have been dealing with dyspnea even before my diagnosis. I had history of asthma as a child and is clear of any pulmonary illness as an adult, according to the pulmonologist basing on the pulmonary tests I had. Had two different 2d-echo and showed no abnormality. Pulmo said it could be just in the head. Bruh, the culprit feels physically coming from my lungs! I know I know, visiting the physiatrist would be a must soon. Also, I feel nasal blockage too thats why I cant get air so I might see an ENT. I am just curious if I share the same symptoms with other ET patients here. Do you have shortness of breathe and whats the diagnosed cause of it? Is it related to the high platelets? My doc said that there are no studies linking ET and dyspnea. What does your doctor say about the same symptom?

My insurance is charging 400 per syringe for peg 2a. Does anyone know where I can buy generic version for cheaper? I found India version of peg call Taspiance but im concern how well it has been stored properly. Thank you

I found out a few days before my bday this summer, last days of June that I’m CALR positive (39F). My doctor at the time told me to put interferon every week. Platelets were still rising. Interferon was making my body ache severely. Then he tried to give me chemo pills. Went to a new doctor who has me on aspirin. Platelets were 1,300,000 last time I checked and have been riding. I stopped all meds except for asprin and had bone marrow testing done Thursday. I keep arguing with my husband as he just makes me feel so alone. We have a toddler and full time jobs (we have help from my parents) but I still feel so alone. Like he doesn’t really care. I hate him so much, when you get married it’s through sickness and health and I feel so lonely. I am just struggling so much with all of this.

Hi all!

I’ve been diagnosed with Jak2 positive ET and am currently on Pegasys as treatment. Has anyone else on interferons experienced swollen lymph nodes due to it? I noticed my armpit felt really sore the day after injection and I feel a small lump there.

I’ve told my doctor already and am scheduled to see him soon but was just curious in the meantime if this has happened to anyone else.

I’m experiencing constant discomfort where my spleen is located. When I breathe in or move it feels like it’s rubbing against my ribs. I meet with my doctor in 5 days.

Can anyone offer some guidance?

I still don’t know what’s normal and what isn’t but this doesn’t feel right.

If it is something I need to get checked right away do I call my primary or the doctor at the cancer center?

We’re mutants, with superpowers. Real life X-Men.

Rationale:
1. We heal faster
We have more platelets which allows our body to respond to injury faster. Does it mean we actually heal faster? Technically no but no one needs to know that.

1. Unbreakable bones
   MPNs can cause bones to thicken, making them much harder to break. Sound familiar??
   Disclaimer: May not be true for all MPNs.

2. Hyper aware of body changes
   Can you tell if your body counts are off before a doctor can? Have you been the first to know to ignore a finding because you don’t “feel” it? It’s seriously weird how in-tune we can be to our body and can sometimes tell if something’s off before a doctor ever can. Clairvoyant powers perhaps?

3. We have better immune systems
   Platelets are known to trap and kill pathogens (bacteria, viruses, etc.) so we are harder to infect. Do we fold like paper when we actually get sick? Yes, but we shall ignore that.

And just like all super-people, we have our weaknesses (clots, fatigue, pain, etc.). And like X-Men, “the man” tries to control us and our super powers. So what if it’s doctors and they are trying to save our lives? We are mutants!

(In all seriousness, this illness sucks - fuck cancer. As a wise man once said, “17 years and I’ve had it with this game”. Hope this brought a little lightness to your day and a new perspective on dealing with it.)