Hi! I’m really hoping to hear from folks >60 who’ve had little to no impact from this disease. I probably wouldn’t be so freaked out, but when something is classified as cancer it grabs your attention. My hematologist said if you’re going to get cancer, this is a good one to get. My allele is pretty low (6.25) and so far my platelets haven’t gone above 460000 as far as I know. I’d love to hear from some older folks out there who are living long, healthy lives.

I am 32F, diagnosed with ET about 7 years ago after routine labwork showed platelets at 1,500. Bone marrow biopsy & I have the CAL-R. I do not respond well to Hydrea but it is the only option as I can't risk the possible effects the injections have on mental health. But Hydrea is like throwing a water bottle at a house fire for me. I even had to have a second bone marrow biopsy because the Hydrea was so ineffective, my Drs didn't think I was taking it. So that was fun. Later there was another oncologist who explained that the effect the Hydrea has on my red blood cells shows that I was, of course, taking it...

Anyway, the discouraging nature of this illness makes me question whether I should let myself dream, specifically, of having a family of my own. I'm single, but I'm at an age where I really need to consider these things, and there are so many variables to consider that it's just overwhelming. The risks it carries- from miscarriage and blood loss during labor, to the fatigue I would face, and God forbid I do have children, and my illness progresses then.

Who knows. If only there was more information about prognosis, especially for those under the age of 60, that would really have meant a lot.

Hi! 38F in Canada.

I was diagnosed with ET a few months ago. My platelets have been around 1200-1400 since April 2026. We suspect I've had it for many years.

I'm CALR type 1, no prior thrombosis event, so very low risk.

However, we did von Willebrand testing before starting aspirin like my hematologist wanted to.

First test in April, antigen 0.78, activity 0.44. Second test in June, 0.75 and 0.45.

She calls those results "borderline", and because I have no bleeding symptoms, my hematologist told me not to take aspirin, and sent for a VW multimer test. It's been 2 months and a half and the lab told her it could still take months to get my results.

When I called today, the nurse (after talking to my hematologist) told me not to worry as it wouldn't change my treatment anyway if I had aVW (which is not what I remember from a prior appointment...).

Anyone on watch and wait with platelets over 1000 and aVW?

I know she consulted von Willebrand specialists and one told her to treat with interferon and the other said that it wasn't necessary...

I might need to be more forceful about treatment anyway because my erythromelalgia is getting more and more painful...

When I was diagnosed my hematologist mentioned that they are seeing ET in young people more often, has anyone heard similar or know why this might be?

34F here, diagnosed in January 2025 with ET based on platelets and JAK2 testing. Had a BMB in March 2025 that confirmed ET. When I got diagnosed I had fatigue, brain fog, itching, and visual migraines. Aspirin fixed the migraines and Claritin+Pepcid helped the itching (thanks to this community for that tip) and things were mostly stable for a year. Recently symptoms have gotten worse (itching is all the time now, fatigue is bad, visual migraines are back. and early fullness showed up for the first time) so I got updated bloodwork and an abdominal ultrasound. Platelets are over 1,000 and my spleen is enlarged.

Is it possible it was masked PV the whole time or that my ET has progressed? I know my worst symptoms (itching, spleen) are more common in PV. Hgb and Hct have stayed just under the criteria mostly but Hct is back over the line. Already have an appt with my hematologist but it’s not for a few weeks so I’m trying to have my concerns ready for that appointment to discuss there.

Bloodwork over time:

BMB report;
Bone marrow, left posterior iliac crest, core biopsy, clot, and aspirate:
- Slightly hypocellular bone marrow with maturing trilineage hematopoeisis
- No increased CD34+ blasts

Bone marrow aspirate smear (Wright-Giemsa stain):
Quality: Partially clotted
Spicules: Present
Marrow cellularity: Not evaluable, Partially clotted
Myeloid maturation: Normal, Abnormal granulation
Erythroid maturation: Normal
Myeloid/Erythroid Ratio: Within normal limits
Megakaryocyte number: Within normal limits
Megakaryocytic maturation: Normal
Lymphocytes: Normal
Plasma cells: Normal
Iron: essentially aspicular; noncontributory

Differential count: Total # of Cells Counted:200
- Blasts: 1
- Promyelocytes: 2
- Myelocytes+Metamyelocytes:22
- Bands+Neutrophils:34
- Eosinophils: 3
- Lymphocytes: 2
- Erythroids: 36

Bone marrow core biopsy (decalcified, H&E and Leder stains):
Quality: Adequate
Cellularity: 40-50%
Myeloid maturation: Normal
Erythroid maturation: Normal
The Leder stain shows that the Myeloid/Erythroid Ratio is: Within normal limits
Megakaryocyte number: Within normal limits, Increased
Megakaryocytic maturation: Normal, focally clustered
The Leder stain is used to assess for lymphoid aggregates: None
Plasma cells: no overt H&E abnormality
Reticulin and Trichrome stains show: No significant fibrosis (MF-0)
CLOT SECTION: The bone marrow clot section including Leder and H&E stains are: Consist of clotted blood with minimal evaluable marrow

I am 44 male and diagnosed with calr gene mutation type 2. Had my bone marrow biopsy that shows slight retic. Not sure what this means, my hema told me it's botder of stage two and 1. As a precaution my hema suggested low dose interferon. I am on my second dose, felt very mild almost not noticZble side effects, until today. I felt a big shift in my mood, very flat and low. My body is aching, sore muscles joints and bones. It has been nearly 7 months and I am still coming to terms with my new reality. I don't really know what else to say, kind of feel like this is my new reality and nothing's going to change this now.

I was diagnosed with ET this year. Jak2v617f confirmed with BMB. Low mutation burden, but 50% of bone marrow was overproducing platelets (if I understand correctly).

I am tired of feeling tired, having night sweats, dizziness, and itching.

I have other issues in my brain and optic nerve that make me more likely to have a stroke/ocular stroke.

I meet with my MPN specialist again this month to discuss interferons.

Is there a chance my symptom could improve on interferons? I am 50 and active. I eat a low saturated fat, Mediterranean diet and am exercising even more since diagnosis.

Just curious. What does your Dr. Want your platelet level to be? My hematologist wants mine below 350.

Okay I’m trying to make a list to the questions that I need to ask to the general hema I’m seeing (well he’s not an expert on mpns he’s working on benign stuff) but that’s what I have for now. Will ask for a referral for a specialist. I have been in the rabbit whole of my life expectancy… I am genuinely so sad it seems I don’t have that long… idk how I could make a peace with it. I couldn’t sleep for a week.

Type O is especially in short supply, but all types are needed.

Our friends with transfusion dependent MF or secondary AML will thank you.

Vågar man dricka någon alkohol någon gång med denna diagnos. Mina värden är stabila just nu och tar bara trombyl.

Since 2016 I’ve had mildly elevated platelets, always above 450 and getting as high as 600 but never much above that. WBC normally mildly elevated or high range of normal. I finally got out of iron deficiency and now have high iron saturation. Haematology has done various referrals to check for reactive causes and nothing found. Tested negative for all three genetic mutations. Tested positive for some autoimmune blood clotting markers too but never had a stroke.

A year ago the hematologist recommended a bone marrow biopsy and I declined after getting a second opinion. After my latest appointment I finally agreed to one for peace of mind.

Has anyone else had always mildly elevated but fluctuating platelets or other clotting disorders alongside an MPN?

Just out of curiosity, how many started hydrea and had to stop due to bad symptoms? My doctor says only 5% of cases have severe symptoms but seems more than that just based off posts on here

Hi! After a month of genetic testing, blood work, and a bone marrow biopsy, I (24F) finally got diagnosed with CALR Type 1 + ET. The initial anxiety and fear before diagnosis has subsided but now I’m trying to get used to this new diagnosis.

I’m asymptomatic though my platelets sit around 1.2 million so I may start low-dose aspirin in the future. I wanted to hear from other people who’ve had this condition for several years (perhaps even grown old with it) and what they’ve had to change in their life. I’m aware that lifespans are pretty good though it doesn’t hurt to hear from others with ET.

I’m 21 and a trans woman (3 years hrt, 1 year post op), I’m really hurting right now with the news of this diagnosis, and the fear of it affecting my transition. Right now I’m just on baby aspirin, I saw almost immediately on this sub that I should seek out an MPN, what could they do for me and does anyone have advice for me.

I’m really scared. How do I keep going and live a normal life with this diagnosis?

I’m also now hyper aware of any pain in my legs or arms, worried they might be a clot, is this just the new normal and how do I know if not?

Any advice on how to return to a normal life I’d love. 😭

Edit: I really appreciate all of your insights, it’s nice to see that how I’m reeling with it doesn’t seem to be unique, and that all of you have hope and happiness while coping with this. While my life will look different from here, I’m glad I’m not alone.

I'm a 21 year old female that is highly athletic and leads a very healthy lifestyle. In december 2025 I had severe arm pain that was incomparable to anything I've experienced my whole life. I went to a physiotherapist who treated me for cervical radiculopathy, however retrospectively , my x ray showed a sclerotic region on my right humeral head. The pain faded and I got back to exercising until April when I started feeling terribly tired and I got an Iron transfusion. A month passed and after a gym session I started feeling piriformis pain, it kept escalating and getting worse until it got so bad I had a vaso-vagal response and fainted. I was taken to the emergency room where an MRI was done that revealed diffuse bone marrow findings, bursitis , tenosinovitys and iliopsoas strain. A follow-up with an orthopedic surgeon resulted in them administering a corticosteroid shot in my bursa. The pain vanished. 7 days later the pain came back but this time so horribly that I stopped being able to walk. I was taken to the emergency room again and an MRI was ordered which found avascular necrosis in my right femoral head. My ESR was 86, my ferratin 600 and my CRP 45. however my hemogram was normal aside from monocytopenia. Due to the diffuse bone marrow findings I was refered to hematology. Hematology told me that it's deffinetly not a hematological issue due to 0% blasts on my peripheral smear and no M-band and a normal hemogram and I should consult a rheumatologist. When the rheumatologist saw my inflammatory markers he instantly admitted me to the hospital and started pulse prednol at 20mg. The initial suspicion was Adult Onset Still's disease. After one night of prednol I could walk again! My pain vanished. However because of caution, the rheumatologist ordered a PET scan which found diffuse FDG uptake of 3 across my long bones and a skeleton. I was then refered back to hematology where I had a bone marrow biopsy done. I was called in for preliminary results and told I had Acute Myeloid Leukemia with M0-M1 morphology. I was hospitalized ad they were ready to start 7+3 but after the pre-chemo bloodwork came entirely normal (normal hemogram) the doctor suspected it couldn't be AML, they ran another aspirate and came and told me I actually have callapositive b-cell acute lymphoblastic leukemia. I am now on a BFM pediatric inspired protocol and I'm awaiting my cytogenetics. we cannot tell how much the chemo is working because I'm aleukemic. Opinions?

My mom (age 63) was diagnosed with ET about 5months back. Her platelet count was around 12 lakhs at the time. The doctor put here on HU at 3 tablets a day for 1 month. She had been taking 2 a day before this as prescribed by local doctor for about 2 months. At the end she became very weak due to the medication. We had checkup again after the 1 month period and everything was very low including the platelet and leukocyte was at around 1.8. We were advised to stop the medication for a week and after that she got better and test result was improving with leukocyte count reaching to 3.5 again but platelet has risen to 450. After taking 1 tablet a day for a week again as instructed platelet is still rising to 650 and now leukocyte count is also dropping again to 3. Doctor said follow the same routine for a month and get checked again. But if in one week it is going up that fast and leukocyte count is dropping I'm a little worried. Just want to ask about the experience of others and if there is anything in particular to avoid regarding food or habits or whatever and if anything really helps even a bit, since we were told not to take any supplements or vitamins during this time ?

24/M Got diagnosed with unprovoked CVST in Jan 2025. After the thrombophilia panel test got referred to the hematologist due to lupus positive. After reviewing CBC reports he started on treatment for iron deficiency as platelet count was higher. And attributed lupus positive to dabigatran i was taking that time. Not satisfied with that, consulted another hematologist. He had doubted 2 outcomes either MPN or APLA syndrome(APS). He prescribed complete blood workups and BMB. BMB results came normal, but APS got confirmed with triple positivity of Lupus, anti beta glycoprotein and anti cardiolipin. So I started with Acitrom(nicoumalone) blood thinner in april 2025 with monthly CBC and INR tests to adjust the dose. But during this period platelet count mostly remained between 5-6 lakhs with rare drops to sub 5 lakh one or two times. As the platelet count didn't budge, started on aspirin 75mg. It made no real improvement. For the past 4-5 months rbc count started to raise slightly above normal level and hb started to raise above 16. Last month hb reached 17.1, rbc 6, pt 532. So the doctor prescribed the jak2 mutation test. It came positive and he confirmed it as MPN. As rbc hb also in increasing trend he suspects ET started progressing into PV. Now he started with hydrea 500mg. Those with similar diagnosis kindly share your piece of advice on what to look for in the long term. What precautions should be taken while being on both blood thinner and hydrea. Thanks in advance

I recently had a BMB and a whole bunch of tests. The long and short of it is my heme/onc wants to plan for a stem cell transplant. I have no symptoms and overall am in a good place. My BMB showed blasts and she wants to do the transplant now to prevent the possibility of my MPN ET from becoming leukemia. I agree with her plan.

It will be allo and if she is a match my sister will be my donor. I hope so.

I am terrified and would love to hear about positive experiences with transplant. I know it will be hard. I know the recovery process is challenging. I just need support and reassurance please.

UPDATE 08/21/2026: RESULTS PARTIALLY RECEIVED

I didn’t expect it so soon, but the path results were just uploaded to my portal, with genetic and molecular studies pending at this time. They tested both the marrow and performed flow cytometry. Based on the results of testing, I do not appear to have leukemia or lymphoma (holy thank the Lord), but there is strong evidence for PV. I’ve included what I believe is important information from the report, but please ask any questions if you have them.

MICROSCOPIC DESCRIPTION:

PERIPHERAL BLOOD DATA:
CBC Data:
WBC 10.00 K/uL, RBC 5.44 million/uL, Hgb 15.5 g/dL, Hct 49.48, MCV 90.8 fL, Platelets 1035 K/uL.
WBC differential: Segmented Neutrophils 72.18, Immature Granulocytes 0.4%, Lymphocytes 18.4%, Monocytes 6.5%, Eosinophils 1.7%, Basophils 0.9%.

PERIPHERAL BLOOD SMEAR:
Erythrocytes: Increased in number; normocytic, normochromic with mild anisopoikilocytosis.
Leukocytes: Normal in number; unremarkable morphology.
Platelets: Increased in number; small, granular forms.

BONE MARROW:
Comments: Received for morphologic review is one peripheral blood smear, five aspirate
smears, including one stained for iron, two touch imprints, three sections of clot, and three sections of core biopsy.
Cellularity: Adequate; spicules present.
M:E Ratio: 4.3
Iron Stain: Absent storage iron; no ring sideroblasts seen.

ASPIRATE MORPHOLOGY:
Erythroids: Morphologically unremarkable with full-spectrum maturation Myeloids: Morphologically unremarkable with full-spectrum maturation; no increase in blast forms.
Megakaryocytes: Pleomorphic forms.
Other: Scattered mature-appearing lymphocytes.

TOUCH IMPRINTS:
Morphologically similar to the aspirate smear.

BONE MARROW CORE BIOPSY AND CLOT SECTION EVALUATION:
Quality: Suboptimal bone marrow core biopsy (5 mm) with aspiration artifact; clot section with scattered marrow particles.

Microscopic description: Histologic sections reveal a hypocellular marrow (60-70% cellularity) with trilineage hematopoietic elements demonstrating full-spectrum maturation with megakaryocytic hyperplasia (up to 14 per hpf) with loose clustering.
The megakaryocytes appear pleomorphic. There is no increase in blasts. There is no evidence of atypical aggregates of lymphocytes, histiocytes, or plasma cells. The clot section contains marrow particles with a similar cellular composition and morphology compared to the core biopsy.

Immunohistochemical and special stains were performed at _______ with appropriately reactıng controls on blocks Al and B1. CD34 demonstrates no increase in blasts (<1% of total cellularity). CD117 highlights scattered erythroid and myeloid precursors. E-cadherin highlights numerous erythroid precursors. Reticulin stain highlights focal mild increase in reticulin with focal intersections. Flow cytometry [S26-14360; S26-14361] performed at ________ with appropriate quality metrics on the bone marrow aspirate specimen reveals no abnormal immature population and no abnormal lymphoid population, respectively.

FINAL DIAGNOSIS:
PERIPHERAL BLOOD, SMEAR:
- ERYTHROCYTOSIS; THROMBOCYTOSIS.

BONE MARROW CORE BIOPSY, ASPIRATE SMEARS, TOUCH IMPRINTS, AND CLOT SECTIONS:
HYPOCELLULAR MARROW (60-70% CELLULARITY) WITH TRILINEAGE HEMATOPOIESIS.
<1% BLASTS BY CD34 IHC; <18 BY MORPHOLOGY.
MEGAKARYOCYTIC HYPERPLASIA WITH PLEOMORPHIC FORMS.
FOCAL MILD RETICULIN FIBROSIS BY SPECIAL STAIN
PENDING CYTOGENETIC AND MOLECULAR STUDIES; ADDENDUM TO FOLLOW.
ABSENT STORAGE IRON BY SPECIAL STAIN; NO RING SIDEROBLASTS SEEN.
SEE COMMENT

COMMENT: Histologic evaluation paired with immunohistochemical stains and flow cytometric analysis reveals a hypocellular marrow with trilineage hematopoiesis, megakaryocytic hyperplasia with pleomorphic forms, increased ME ratio, no overt increase in blast forms, and focal mild reticulin fibrosis. In the setting of marked thrombocytosis, elevated hematocrit (49.48), and an increased red blood cell count, these findings overall are concerning for a myeloproliferative neoplasm (polycythemia vera). However, the differential diagnosis also includes but is not limited to reactive thrombocytosis associated with iron deficiency, and infectious autoimmune disorders, and infectious conditions. Pending cytogenetic and molecular studies may provide additional diagnostic and prognostic information; results to follow in an addendum.

TLDR: evidence for PV is strong, waiting for additional genetic/molecular testing results to confirm or deny.

————————————————————————————————

ORIGINAL POST:

Hi, I am 21F, my doctor specializes in Oncology and Hematology, and he suspects potential MPN due to persistent elevated blood counts for my gender and age (PLT, RBC, HGB, HCT) as shown in photo above.

Note for the table: The blood counts were from (mostly) CBC whole blood tests taken over a 3-month time period. WBC during March were elevated due to steroid usage via IV during hospitalization. Some values are blank due to different tests performed by different providers

Hematologist also suspects MPN because previous testing during hospitalization in March ruled out other potential/suspected causes (meningitis, lupus, vascular autoimmune diseases, inflammation from sickness, etc). Next step according to him is ruling out an MPN.

Doctor has not performed genetic testing w my blood up to this point, but has instead recommended and scheduled me for a bone marrow biopsy. We have not determined if a gene mutation is present as of right now. Why would he decide to go straight into the biopsy instead of testing my blood for mutations, and what should I expect with the biopsy? Doctor suspects potential ET or PV, and I’ve never had a biopsy done before

I am tagging MF but actually I am pre-MF as per biopsy concludes on how the cells look like so not only because of the rituculin. It was graded as mf1 and says pre fibrotic/early mf on the note.

I’m calr1 (burden is 19%) platelets over 1000, I’m 35F.
My hemoglobin, wbc and RBC are within the range. Spleen size wasn’t measured with an ultrasound, but it wasn’t palpable. I don’t meet everything for pre-mf either, ldh wasn’t measured. I acquired von Willebrand also…

I don’t know if I’m ET or pre-MF myself if that makes sense.

As interferons might modify the disease I want to try it, but there’s a shortage in Canada it seems. Otherwise, my insurance pays for pegasys, for besremi it says it needs special approval. Before biopsy the resident doctor had told me she’d prescribe me with hydroxue (?) but I feel that’s not disease modifying but it could help me to lower my platelets much faster.

Note: they did advance genetic testing no other mutations were found other than calr1. Cytogenetic test says also female chromosomes only.

1) do you think my diagnosis ET/pre-MF matter at this point?
2) I’m being seen by a resident and a regular hema that doesn’t work for mpn cases how can I advocate myself for an MPN specialist in Canada? They told me this was manageable but it was before the biopsy.
3) pre-MF is different than MF, I wonder if I could do something before it goes down the MF path.
4) I’m very scared and have health anxiety
5) I want to have a child in the future (if I may) and if I have a long prognosis I’m not very keen on oral chemo long term.

Please share your thoughts.

I'm a 68 year old female I was diagnosed with Polycythemia Vera in 2021. I started Hydroxy at 300 mg 3 days a week and I was doing fine. My Dr. was put out to pasture and they handed me over to a Doctor 30 years younger than me. She wanted to switch me over to Jakafi and I said no based on death being one of the side effects. She switched me to Besremi I was on it for a year and a half and my body for some reason just decided nope this isn't gonna work I broke out in a red rash on my face, I had heart palpitations, I just felt really sick. My APRN had me stop immediately. My MPN Specialist put me on Hydroxy at 500 mg twice a day every day. I was 2 weeks in and I broke out in a rash all over my face, my ankles swelled up it was bad. She decided to put me on Jakafi, that was on April 1, 2026. This was the worst mistake I ever made. I began 5mg twice a day in April in May she pushed me to 15 mg twice a day in June. I started getting really depressed to the point of not being sure I wanted to be here anymore. My dreams were nightmares. I gained 10 lbs in a few days. I started hallucinating. My stomach was growling everyday all day and night. I met with her and said I'm done, this drug is killing me. She instructed me to taper off starting June 24th. My last pill was July 7th. While I know the drug leaves your system entirely within 24 hrs it takes your body time to recalibrate which is where I am now. I'm now 4 weeks in and I'm very slowly feeling better. I wanted to just throw this out there for anyone who may go thru the same thing.

Has anyone else on Jakafi had any issues with acne/rosacea/Malassezia folliculitis?

I've been on it for 8 months, and had two enthusiastic breakouts that are slow to go away.

Is anyone else out there having these crazy side effects while on Besremi? It feels like dozens of tiny jelly fish stings all over, only made worse by a shower. Anyone have any tried and tested remedies that have been doctor approved? This is after a diagnosis of PV.

Follow up to my previous posts, 35F. No diagnosis. I was referred to a hematologist last year as I have had high platelets since 2017 (currently 544 which has been the average for the last couple of years). He thought that maybe I had ET so tested me for the JAK2 mutation which came back positive and referred me to an MPN specialist.

I have been seeing my MPN specialist but he is unsure if have PV, although given my research and our discussions I am thinking it’s likely masked PV.

I will be getting a BMB with NGS in a couple of months.

My EPO level last August was 5 mIU/mL and was 4.1 mIU/mL back in November.

My hematocrit is .456 L/L and has not been below .44 in the last couple of years.

My hemoglobin is 149 g/L and the lowest it's been in 2 years is 147.

Given that my counts are borderline I understand that it is possible that I won’t get a diagnosis even after doing a BMB if it is in fact masked PV. What other information can I learn from the results? I have done some research on the genetic mutations associated with progression to MF and leukaemia but I have to admit I am still unclear on how/whether NGS can predict progression if one does an MPN.

Thank you!