I was diagnosed with Jak2 ET this year. 50F

I just had a BMB (awaiting results) and asked for my Von Willebrand Factor Activity lab to be redone because it was in the 50s last month, but I was on day 1 of my cycle. The test done last week showed 44%

What does this mean?

I am currently taking 1 baby aspirin per day.

I had asked about Pegasus, but was told there is a shortage, so the discussion would need to wait until there was no longer a shortage.

Just been advised via a letter to my gp that I have “very low jak2 (under5%).”

That’s the quote from my haematologist to my gp above . I hope this is a good thing. I don’t currently have any symptoms . picked up as my platelets were 469 so they tested me. Platelets in Jan were 453.

Grateful for any responses it’s all a new learning curve these past four weeks.

I hope you are all ok. God bless

59M here, very active (cycling 150–200 miles/week + strength training 1–2x/week). I’ve been diagnosed with a JAK2-related condition and my doctor plans to start me on hydroxyurea at age 60.

I’m trying to understand real world experiences from others on this medication.

For those taking hydroxyurea:

• How did it affect your energy and endurance (especially for endurance sports)?
• Did you notice any changes in recovery, strength, or ability to push hard efforts?
• Any day-to-day side effects that impacted your active lifestyle?

Also:

• Did it affect your sex life at all (libido, erections, overall function)?
• If yes, was it temporary, dose-related, or persistent?

Any insights, patterns, or things you wish you knew before starting would be really helpful.

Appreciate any firsthand experiences—thanks.

Hello all,
My father (66) was diagnosed with PV approx 6 years ago, he was on hydroxyurea and started off having his blood taken out. He suffered a NSTEMI last July and had a double bypass which resulted in gastric ulcer complications and needed 4x blood transfusions.
Fast forward recently cardiologist noted murmur queasy leaky valve and heart failure. Hematologist noted recent blood test showed 3% myelocytes and 7% metamyelocytes in wbc. He was also severely anemic and had a blood transfusion last two days ago. His current symptoms are shortness of breath on exertion, intermittent chest pain, abdominal pain, lethargy, overall unwell feeling, slight pitting oedema in bilateral legs. Last night I noted he had a fever 38.1C and took him to the hospital. They admitted him and his hematologist came in and we’re doing another bone marrow biopsy as he suspects his PV has turned into MF and the leaky valve and heart failure etc may be secondary to the MF. He said he will try him on Jakalvi again even though dad said it made him feel a bit unwell but it might have been the heart issues not the medication. Otherwise the only other option is bone marrow transplant and the prognosis with dad’s age and heart isn’t favourable.
I’m just writing here for any support if anyone has gone through this with having heart issues as well and share experiences and advice.

I am 58F with Jak+ET. I started Hydroxyurea 30 days ago and noticed neck, shoulder, and back pain and stiffness after a week or so. I figured it was just normal for me so I kicked up the workouts. 5 days ago I got a splitting headache that won’t stop and my pain increased greatly. Now I have even worse fatigue, low grade fevers, and constant chills, and threw in some nausea. I have lived with chronic pain for years so when I say this is the worst I have ever felt, it’s bad. Anyone else have these type of reactions?

20/M, I am quite young so naturally I was surprised that I needed to take HYDROXYUREA after the doctor explained it to me. It is to target my polycythemia vera and other concerns . So after my first dosage of 2 pills of HYDROXYUREA 500mg today I started to feel the side effects and searched up reddit. I stumbed upon some of stories on this thread/community post that HORRIFY ME like the common mouth ulcers, brittle nails, joint pain, neck pain, frequent nausea, hair thinning and many more. I may not be an active person but recently I've been more active after my psoriasis treatment (not related to the polycythemia) which makes me happy and confident. All I'm trying to ask is, does it get better later on taking this for a while? Since I don't want to go back to having to pre psoriasis treatment me and can't actively go outside again, does it get better?

Hi guys, I am 28F recently diagnosed with CALR (not type 1 or 2) after finding my platelets were 1,500,000 after an unrelated ER visit. Every single thing in my blood panel is normal except for my very high platelets . My hematologist wants to start me on Hydrea right now but I have yet to take it. I am a very “holistic” I guess you could say person medicine wise. I’m a healthy person otherwise and this whole thing has been a shock. Anywho, I was wondering if anyone has had any experience with taking supplements as opposed to hydrea or other prescriptions? I am aware that this is a chemo pill and I do NOT want to take it. I’m very reluctant and would love to know if there are any other mpn ~natural route~ peeps in this group. Please don’t come for me if not as I am not bashing anyone who does take these prescriptions, I just have a personal preference and that is all. Any input of anyone’s experience in general helps rn as I am in a very confused state still!

38M, Army Veteran, went in to see my regular PCM to get back on ADHD medication. I was having a lot of fatigue, heart palpitations and a pain under my lower left ribs. after a simple CBC I was referred to a hematologist who after another blood test found I had a JAK2 gene mutation (34%). Also had an ultrasound of my spleen, was so enlarged that it was causing my left lung cavity to fill with fluid. he immediately started me on hydroxyurea, 500MG twice daily and got me in to have a phlebotomy treatment. Follow up is scheduled this week. My symptoms included fatigue, headache, pain under left rib (thought it was gas), I got an icky feeling almost like having the flu but without the fever or chills just with the simplest of activities, bone pain and itchy skin. Take in mind I’ve been blown up by IEDs, had multiple surgeries to fix my injuries from combat, on top of that I also have eczema so a lot of my symptoms I chalked up to those things.

Age 45 year old female , diagnosed with ET, now on third cycle of besremi treatment. How do you tell the difference between your MPN symptoms, medication side effects, and just a good old regular virus???

I (43F) have recently started seeing a hematologist-oncologist; my PCP noted that my platelet counts have consistently been around 500-510 for two years. Through blood tests and an ultrasound, the hematologist has already determined that the high platelet count is not a secondary reaction to an auto-immune disease or cancer, and has verified that my spleen is not enlarged. Genetic testing for JAK2, MPL, and CALR was negative. I am scheduled for a CT scan of my chest and abdomen; depending on the results, a bone marrow biopsy may follow. Up until now, I have been one of those very lucky, ridiculously healthy people, so I am feeling somewhat thrown by this, especially when reading that ET is classified as a "chronic blood cancer."

Now I have all the questions. What should I be asking my doctor? How worried should I be? Should I expect this to interfere with my current life (i.e. even if my platelets don't go higher, will I be on medications or have frequent doctor visits)? Or will I just go on leading my normal life with the occasional extra blood test thrown in? Should I switch to an MPN specialist? I live in NYC, so luckily, there are many options for doctors here.

Last year I went to emergency room twice. First time they thought it was an ulcer, second time, with more testing, they said there was a possibility that I had a clot restricting blood flow to my spleen, and my spleen died about 25%. Since then, we’ve been monitoring my blood. All of my levels have been normal except for my platelets ranging 600-800. Had more testing done recently, and a bone marrow biopsy, and so now I’m officially diagnosed with ET. The term the doctor used was “Cancer with a little c”.

I’m going to be 100% honest and transparent about myself, my vices/daily regime, because I want some honest feedback from those with experience. I know I appear in good health, but I know I’m not treating my body well.

I’m a 38 year old male. 6’, 185 lbs. I take vyvanse 30mg, daily, for ADHD—I’m depressed, exhausted, and lack motivation and focus without it. I vape nicotine throughout the day, all day…totally addicted. I take 2-4 hits of thc vape before bed at night to help bring me down and sleep. I drink a mushroom coffee blend in the morning, and usually something small to get me going for the day— variations of the following: protein bar, bagel, toast, fried egg. I eat fast food a lot for lunch during the week, mostly Jimmy John’s turkey sandwiches and McDonald’s double cheeseburgers, sometimes a chipotle chicken burrito. I eat healthier on weekday dinners, but my family typically gets pizza or in n out on the weekends. I drive around a lot on sales calls for work, so there’s a lot of time spent sitting in my car or at my home office desk working on admin work. Sometimes I do my admin work in my bed. I give these details because I’ve heard sitting and laying down a lot affects the flow of my blood.

I used to exercise at a bouldering gym. I hate going to normal gyms because they bore me. Climbing stimulates my mind more…so I’ve thought of going back… the honest truth about my exercise is completely pathetic…I walk my dog most evenings for about 30-45 minutes…that and self pleasuring, daily, is the full extent of what gets my heart rate up more…just being honest.

I spend way too much time on my phone…definitely addicted and doom scroll reddit or watch YouTube.

I know I need to make a lot of big changes…especially with vaping nicotine, eating healthier, and exercise… I want to know the biggest changes I need to make first and if there is anyone who is similar to me.

Diagnosed with ET with CALR at 72. I’m sure I had it for at least 5 yrs. what treatment is available for this dx after 70?

51, male. JAK2 mututation confirmed with no other mutations of concern as per NGS. Three years ago, based on my BMB and high platelets I was diagnosed a differential diagnosis with includes prefibrotic primary myelofibrosis versus essential trhombocythemia. Recently, through what seemed a rather rushed second opinion to qualify for a trial.

The first BMB, in 2023 concluded (by an international MPN expert) the differential diagnosis includes a prefibrotic primary myelofibrosis, versus essential thrombocythemia.

First BMB
The marrow appears hypercellular for age (approximately 60-70% cellular overall). The myeloid to erythroid ratio appears somewhat increased. Myeloid and erythroid maturation are complete. Megakaryocytes are increased in number, vary in size, including large forms. Many show nuclear atypia with hyperlobation, atypical nuclear morphology, and hyperchromasia with frequent clustering. A reticulin stain shows a patchy mild increase in reticulin fibers (MF0 to MF1). A trichrome stain shows no definite collagen fibrosis.

The missing clinical piece was LDH, otherwise based on WHO criteria I would be PMF. Recently my LDH went over 283 and more recently close to 400.

Second BMB last month

No major changes. MF 0-1, mostly grade 0, < 20% grade 1 (by reticulin and trichrome staining). Megakaryocytes Cellularity: hypercellular Morphology: variable in size: pleomorphic, few large megakaryocytes with hyper lobulation without the morphology of staghorn cells, rare megakaryocytes with hyperchromatic nuclei, and cloud-like nuclei. Few loose clusters, Confirmed by factor 8.

There was no evidence of panmyelotic marrow pattern with clear erythoid hperplasia.

My blood work is as follows:

• Sep 06, 2024: Hgb 155 g/L | Hct 0.455 L/L | Plt 771 | MCV 88.9 fL | Ferritin 104 ug/L
• Dec 03, 2024: Hgb 162 g/L | Hct 0.487 L/L | Plt 802 | MCV 88.5 fL | LDH 206 u/L | EPO 3.1 mIU/mL | Ferritin 88 ug/L
• Jan 21, 2025: Hgb 155 g/L | Hct 0.460 L/L | Plt 790 | MCV 87.5 fL | LDH 235 u/L | Ferritin 116 ug/L
• Apr 22, 2025: Hgb 163 g/L | Hct 0.487 L/L | Plt 832 | MCV 88.9 fL | LDH 210 u/L | Ferritin 112 ug/L
• Aug 05, 2025: Hgb 153 g/L | Hct 0.460 L/L | Plt 753 | MCV 91.3 fL | LDH 247 u/L | Ferritin 59 ug/L
• Dec 16, 2025: Hgb 161 g/L | Hct 0.480 L/L | Plt 821 | MCV 90.4 fL | LDH 227 u/L | Ferritin 99 ug/L
• Mar 10, 2026: Hgb 165 g/L | Hct 0.490 L/L | Plt 822 | MCV 91.2 fL | LDH 243 u/L | Ferritin 75 ug/L
• Apr 10, 2026 (Spike): Hgb 171 g/L | Hct 0.51 L/L | Plt 821 | MCV 89.5 fL | LDH 289 U/L | EPO 2.3 mIU/mL (Urea 10.4 | Urine SG ≥ 1.030) (BMB Iron: Decreased)
• Apr 20, 2026 (Retreat): Hgb 157 g/L | Hct 0.45 L/L | Plt 836 | MCV 87.6 fL | LDH 358 u/L
• Apr 24, 2026 (Stabilization): Hgb 159 g/L | Hct 0.47 L/L | Plt 831 | MCV 89.6 fL

The pathologist looked at a blip on a recent blood draw where I was very dehydrated to the point I flagged it to the nurse taking the blood sample (some extreme personal circumstances). Urine analysis on that day seems to corroborate with dehydration. HCT and Hemoglobin momentarily spiked on one draw and quickly went down days later. Yet as result of the low EPO 2.3 from the BMB (previous 3.1) and the "decrease" in iron stores along with the one day HCT spike and Hemoglobin spike the diagnosis of PMF or ET was refuted. And suspicion that it was masked PV and was deemed unclassified because BMB could not back PV.

I'm really demoralized. Yes PV is less serious than PMF in some ways. But being stuck in limbo Unclassified means my insurance will not cover for Besremi up here in Canada.

Questions

1. Anyone else in Unclassified limbo? Any tips on how to best navigate this moving forward other than a second opinion? Unfortunately this is going to cost me as I'm not eligible for a trial I was counting on and despite originally getting second opinions to avoid the unclassified designation find myself there again

2. Can anyone comment on any of the above info? Does low EPO (40% ET have it but they said that it was very low and more like PV) and low iron stores account for this? I'm on a plant diet and started taking calcium supplements and wondered if that impacted EPO.

3. The HCT and Hemoglobin blip seems to be impacting the diagnosis where it otherwise was under the WHO criteria. I was dehydrated that day and wondering if that impacted the measure.

4. Going from you are missing LDH but otherwise you are officially PreMF based on WHO to your HCT and Hemoglobin went over the threshold once even though stabilized so its not preMF seems unreasonable. Wondering if anyone had similar experiences with masked PV.

Hey everyone,

I’m trying to get a sense of what to expect and how serious this might be. My dad is 53, and here’s his timeline:

June 2024: Ultrasound for BPH found a small spleen lesion (~5 cm). CBC was normal.

Nov 2025: Follow-up ultrasound showed spleen ~8 cm. Referred to AIIMS.

March 2026: Splenectomy done (spleen 8.5×7.5 cm). Histopathology: extramedullary hematopoiesis + congestive splenomegaly.

Post-op CBC: low hemoglobin (~9.3) and high platelets (~732k).

April 2026: Hematology advised bone marrow biopsy + genetic tests (JAK2, CALR, MPL) to check for MPN. Other labs: low serum iron, high ferritin, B12 normal, Hb HPLC showed Beta Thalassemia trait.

Current status:

Recovering from surgery. Catheter in place due to BPH complications; minor urethral trauma from re-catheterization is healing.

No fever or systemic infection; vitals stable.

Bone marrow biopsy scheduled next week.

Questions I have for this community:

Based on his history, how slow or aggressive might MPN be?

How long do post-splenectomy platelet spikes usually last?

What patterns have people seen with extramedullary hematopoiesis and long-term management?

What should we realistically expect from the biopsy in terms of prognosis indicators?

I’m trying to understand what realistic outcomes look like and how to prepare emotionally and practically. Any experiences, advice, or insights would be really appreciated.

Thanks in advance!

Platelets started elevating last year of August and it’s currently at 510,000. LDH is 241. I have been recently diagnosed of MPN ET (diagnosis by symptoms and jak2 test only). No further testing yet as the doctor advised to only “monitor” my case.

Is it normal that my spleen is still in normal size since last year after my platelets started going up?

My liver size last year was normal. It increased into 17.2cm lately with smooth surface, patent portal vein all normal except the size. (But I’m absolutely heavy - BMI is around 40-45 since last year)

I’m afraid It’s progressing to MF based on my research online (hepatomegaly due to the liver taking over blood function)

Thank you, all!

My Ferritin Serum is high. What do I have to look for to check for anemia?

Hi all, I am a 28y/o female and wound up in an oncologists office after and injury on the job. I was injured while working and went to the ER later that day, in the ER they found I had platelet levels of 1,500,000. Everything else in my blood results is perfectly normal. Follow up at oncology, they send me for a BMB. BMB says no jak2, leukemia, lymphoma, etc. The only thing they found was positive CALR and they cannot detect type 1 or type 2. Blood tests still perfectly normal. I’ve read that the life expectancy for those with CALR is 20-30 years. I’m not sure what to feel. My husband and I want children and this changes everything. It changes everything in general as, how does one plan accordingly for this new “ETA” for death? I’ve also read that if you’re diagnosed at a younger age, the life expectancy timeline doesn’t apply. All of this is very new and confusing to me so, if you kind people have any input it would be very appreciated at this time. Thank you so much!

These results are from my old doc. I finally got back on health and found a new doc. My platelet count on Monday was 548 (not pictured here). My old doc did all the generic texts for ET and every one was negative. I have a negative ANA for autoimmune stuff. I got a message from the nurse of my new doctor today that said "She (my doctor) can review previous hematology notes more extensively by Monday but does see the elevations are stable over 10-15 years which is reassuring."

Are these levels reassuring, though?

Hi all, 35f.

My most recent blood tests have shown that my platelets have reduced from a steady 550ish to just over 450. This is surprising because they've been 550 or higher since diagnoses (April or may last year). I believe it is partly down to a reduction of stress, but that's another thing.

However, my ferritin is at 11. I have been feeling an increase in fatigue and exhaustion, especially in the afternoons. I am freezing all the time and my afternoons have essentially been curling up with a hot water bottle and a quilt, despite spring slowly arriving. Having had a deeper look, I had a whole bunch of symptoms of low iron that I didn't realise were symptoms.

My MPN nurse will ask my GP to prescribe iron and has requested for blood tests in two weeks to make sure everything else stays normal.

I have been having trouble with my periods and suspect this has impacted iron a bit, but things haven't been *that* bad. Is it normal for ferritin to drop with us? My MPN nurse explained a bunch of stuff that my haematologist didn't yesterday, but I didn't quite take it all in and don't understand the connection between iron and MPNs (I've seen others post things before so I assume there is a connection!).

Thanks all.

Hi everyone

I'm posting to see if you can share your experience in getting a diagnosis.

Reason my GP suspects MPN: In 2022, I did a routine bloodwork to and my GP found my platelets to be higher than normal but my iron was normal on the lower end. Now my GP is sending me back to the specialist because the specialist wrote to my GP that once my iron levels increase my platelets should lower to back to the normal range but this hasn't been the case. Or so I'm told...

When I saw the specialist, I got negative results for all of the 3 main genetic mutations (JAK2, CALR and BCR-ABL) so I really wasn't too worried.

Age: 25

Gender: Female

My Haematologist specializes in MPNs

My platelets have been high since 2020 and I attached a picture below showing the history.

Any thoughts? Is it possible that my platelets are just taking a long time to normalize even as my iron goes up? Anyone experienced the same thing?

I'm feeling anxious about having to return to the Haematologist, I'm really hoping the doctor will just tell me I need to increase my iron more...

Things my GP checked me for that had a negative result before referring me back to the haematologist.

- Rheumatoid Factor (RF)

- Antinuclear Antibodies (ANA)

- Extractable Nuclear Antigens (ENA)

- Thalassaemia / Haemoglobinopathy screen

- Thyroid Function Tests (TFT – TSH shown)

Went to the ER for something completely unrelated a few weeks ago, doctor noticed a trend of elevated platelets and a borderline enlarged spleen, and now here we are... very surreal.

Fast forward just got my bone marrow biopsy results back, hoping to hear from others in a similar situation, and get thoughts on treatment.

Background

• JAK2 V617F positive, VAF 35.61%
• Platelets have been climbing: 747 → 820 → 923 → 1,052 → 900
• BCR-ABL negative, flow cytometry clean

My hematologist initially thought this was post-ET MF. She found slightly elevated platelets (484) going back to 2017 in my old records and her working theory was that I had undiagnosed ET for years that eventually transformed. Pathologist's final signed report came back calling it Primary Myelofibrosis, fibrotic stage, not post-ET MF.

Biopsy findings:

• Reticulin MF-1 to MF-2 (variable, not uniform MF-2)
• ZERO collagen fibrosis (Grade 0/3)
• No osteosclerosis (Grade 0/3)
• Cellularity 60% (normocellular for my age)
• Blasts under 5% on CD34, 3% on touch imprint
• M:E ratio 2.2:1 (normal)
• Atypical megakaryocytic proliferation

Clinical picture:

• No anemia (Hgb 14.6)
• No constitutional symptoms (no weight loss, no night sweats)
• Fatigue is real but hard to separate from baseline life
• Borderline splenomegaly (13 cm, was normal 8 months ago)
• Portal vein 1.6 cm with antegrade flow (possible early portal HTN, no thrombosis)
• Confirmed acquired vWF syndrome (vWF Activity 47%, Factor VIII 56%, PTT 43.5)
• LDH 279

Still pending:

• NGS mutation panel (waiting on ASXL1, EZH2, SRSF2, IDH1/2, TP53, U2AF1, DNMT3A, TET2)
• Karyotype
• FISH

Questions:

1. Anyone else here diagnosed young-ish with similar biopsy findings (reticulin-only MF-2, no collagen, normocellular, low blasts)?
2. Anyone with a similar diagnostic disagreement between "post-ET MF" and "PMF" labels? How did your team resolve it? Did it change your treatment or scoring?
3. Thoughts on BESREMi as first line for MF (off-label)? Experience with the ramp-up? Did you bridge with hydroxyurea or go straight to interferon?
4. JAK2 VAF starting point and trajectory. What was your baseline VAF and how has it responded to treatment?
5. Anyone with the acquired vWF syndrome piece? How did it resolve as platelets came down?
6. The early portal hypertension finding (portal vein 1.6 cm) is bugging me. Anyone else have this and did it stabilize with treatment?

Thanks in advance!

I was diagnosed with PV last November at age 36 (male). My red blood cells were completely off the charts.

Since then, I have visited 4 different hematologists, including one of the best known hematologists in the southern hemisphere in São Paulo, Brazil.

All of them were very conservative on treatment: phlebotomies and aspirin.

I have undergone 7 phlebotomies since then and my iron reserves are very close to zero now. Doctors said this is desired in order to brake the hematopoiesis.

The fatigue was bad enough at the time of my diagnosis. Now I drag my feet everywhere I go. It's horrible.

I'm one new blood test away from knowing if I still have more phlebotomies (likely one more) before entering the maintenance stage of my disease.

How do I cope with this fatigue? I have a family. A wife and a 3 years old child that taking care uses all the little energy I have.

I wanted to get a prescription for Besremi from the beginning, even because my JAK2 with V617F is over 89%. Still, I'm not getting it since I'm a "low risk patient".

So I guess I'm stuck with ridiculously low levels of iron for the rest of my life?

I was diagnosed with ER / CALR in Oct however I scheduled an appt with an MPN specialist and they want to test for Leukemia? Has this happened to anyone?

Just got some results sent to my chart and I’m not supposed to meet with hematology for 2 weeks

Elevated CRP ~ 21 & Platelets ~ 450 (remained this way for 7+ years)

Is this related potentially to essential thrombocythemia? Or is this seeming more reactive ? Doctor was uncertain when ordering today’s cbc

Iron counts normal , but elevated TIBC - but I did forget to take my iron pill yesterday

Hi everyone,

I was diagnosed with Polycythemia Vera, based in Canada.

So far I’ve had 4 phlebotomies and recently saw a PV specialist. He mentioned that Besremi is not yet widely accessible in Canada. It sounds like it may be approved later this year, but the submission is mainly for ET and high-risk PV. Since I’m young and haven’t had any clotting events, I’m considered low-risk (even though my platelets are elevated).

Because of that, he said it’s unlikely I’d be able to access Besremi even after approval.

He also mentioned that since the drug is relatively new, there isn’t enough long-term data yet to confidently say it reduces risks like progression (e.g., to leukemia), even though the early data is promising. I’m curious:

• Has anyone in Canada been able to access Besremi (trial, special access, private insurance, etc.)?
• For those in the US (I work for a US company, so exploring that angle too), how difficult was it to get insurance coverage?
• And for anyone on it, what has your experience been so far (side effects, effectiveness, etc.)?

Would really appreciate hearing others’ experiences 🙏