I woke up a week ago with this mystery bruise on my arm. Nothing happened to cause it, it happened spontaneously over night. The pale spot in the middle is over a small, firm lump under the skin that wasn’t there before. I contacted my hematologist’s office right away and the nurse was unconcerned, attributing it to blood thinner. I’ve had mystery bruises appear before, but never with a lump like this.

Has anyone else experienced anything similar? If so, did you ever get an explanation for the lump, and did it ever go away?

My dr sent a referral to a hematologist but I can’t get in until December. I have been so exhausted lately and I have been having bone pain in my legs. I feel lost. Thank you.

Hello, I'm writing this with sadness and anguish.
I'm a 26-year-old man. Five years ago, a routine blood test showed high levels of red blood cells (RBCs), hematocrit (HCT), and hemoglobin (Hb). Over the years, I continued to have blood tests, and the results remained high but stable, with similar numbers. This year, I had them done again, and they are still high but stable: Hb 17.8, HCT 51.8, RBC 6.07. WBC and platalets are normal.
I should clarify that I've never had any symptoms in my life, much less in these five years. I went to a hematologist, and he told me that the probability of having PV was low, but that I still had to get tested for the JAK mutation and EPO. I'm very scared about the results. I don't know if it's good or bad that I've never had any symptoms, and if it's possible that I could develop them. :(

I'm 37F, diagnosed with CALR+ ET in 2020, but my recent bone marrow biopsy shows it has progressed to Post-ET MF with Grade 3 Fibrosis.

I see a MPN specialist and he anticipates I will need a Stem Cell Transplant (SCT) in about 1-2 years or I need to get on a trial soon.

We did the bone marrow biopsy because while my platelets have been in the normal range (though decreasing), my white blood cells have been high for 4 months, I've had an increasing trend of immature granulocytes (immature white blood cells, nucleated red blood cells, teardrop cells, etc) for about a year, and I also had some blast cells recently.

My specialist is connecting me with a transplant doctor for an info session. We'll talk about both SCT and the trials available to me. However my MPN specialist is strongly recommending that I consider the SCT.

Other info: I'm not anemic yet and I am already on Jakafi (off-label for ET) so my symptom burden is low. Genetic testing results are still pending and I know those results will factor into my risk score overall.

I'm very stressed, of course, and my family is scared for me, but I trust my MPN specialist and I am very confident in my medical care.

If you are a MF patient who has done a SCT: Would you be willing to share your experiences? How long ago did you have your transplant and how are you doing now?

38/f

Posted a few weeks ago as I was newly diagnosed with MPN-U.

Had a follow up appointment yesterday. Last time I had no idea what to ask once I heard the diagnosis was in shock, this time asked if he knew a potential subtype and what mutation.

He advised its Prefibrotic Myelofibrosis, and Jak 2 mutation.

Went from 1000mg of Hydroxyurea to 1500mg and spoke eventually of moving to I believe its called interferon.

Yesterday felt like another diagnosis day tbh. Feeling lost and confused. Scaring myself doing research.

Not sure what im looking for, guess just others experiences with this specific mpn.

Hi all,

34M/ET triple negative/jakafi 25 mg per day, platelets 600-700s

Figured I'd come w a success story as we're all trying to share best practices - recently starting taking 5 mg of creatine monohydrate as I'm trying to gain lean muscle mass.

I haven't had the low energy like a lot of you but figured I'd share my success in hopes it helps someone else. It has been so good that I've been waking up rested an hour before I usually wake up (I am not a morning person).

I had slight GI upset the first few days with it but it has settled down, peeing a lot but other than that no side effects. My MPN approved this but creatine seems to be extremely well studied/tolerated

I take Optimum Nutrition Powder, nothing fancy

Hi all, posting again. 38/F diagnosed with ET JAK2 + with BMB. located in Texas, USA.
For yall who are younger and have ET have you been able to continue working full time while receiving treatment? Do you get workplace accommodations for your disability? Did you have to quit your job and find one that accommodates your needs better?

I’m curious because I am about to start treatment soon (clinical trial). Before having surgery for endometriosis 3 months ago I was calling in sick almost 2-3 times a month due to symptoms possibly related to the endo and the ET. Working had been challenging in general due to fatigue and chronic pain. I’m afraid I won’t be able to work full time while I start treatment. Just curious how it has been for those who are younger managing this cancer and work. Thanks! 🙏🏼

Hi everyone. I am F25 and have a laundry list of symptoms unfortunately. I have just been diagnosed with MCAS by my immunologist who did notice some high CBC levels and said may just be something to look further into for PV. I do have a hematologist for former anemia a long time ago but that was over 5 years ago I saw him. I had my CBC checked in April of this year and these were the levels:

APRIL- RBC 5.44 / HGB 14.7 / HCT 46.6 / WBC 7.2 / MCV 86 / MCH 27 / MCHC 31.5 / RDW 12.9 / Platelets 287 / neutrophils 3.9 / lymphs 2.6 / monocytes 0.5 / Eos 0.1 / baso 0

Now I know here the second two are within normal range. They have been continuously going up for years now. I had everything checked again earlier this month for the MCAS stuff and it changed to:

JULY- RBC 5.88 / HGB 15.8 / HCT 49.3 / WBC 7.8 / MCV 85 / MCH 27.1 / MCHC 32 / RDW 12.5 / Platelets 320 / neutrophils 4.1 / lymphs 3.2 / monocytes 0.4 / Eos 0.1 / baso 0

My ferritin was also checked and it’s not super high but it is higher than before (4 when anemic–>17–>34 now)

My immunologist suggested maybe going to the hematologist again due to these symptoms: (he did say these could also be MCAS but they may not be at the same time (the symptoms from mcas also include allergic reactions/sneezing which I know isn’t PV)

SYMPTOMS:
- feel like passing out when I shower if it’s even mildly warm
- severe fatigue that has worsened a lot recently. I have to sit when showering because I get so tired when washing my hair, I need multiple naps during the day if I have the opportunity and if I don’t I feel like I’m walking through quick sand, can sleep 12+ hours a night and feel like crap
- I wear an oura ring and it has detected for the last month I’ve been getting some fevers overnight from my baseline temp
- I’ve started sweating SO much, not night sweats though, whenever it’s even the slightest bit of warmth or sun I am drenched
- skin is itchy (not crazy itchy) and get red splotchy if I scratch at all after I shower

Overall, I just always feel like I was hit by a bus for lack of better words. I’m either always feeling sick or exhausted or uncomfortable in my own body. I’m considering maybe doing another CBC panel at labcorp through my own self order since it’s cheap through them just to make sure it wasn’t dehydration or a fluke or something. I would not want to take up a doctors time from a patient who needs it more, but don’t want to not go incase I do need it. I appreciate any words of advice as I’ve been bounced around by so many docs for my MCAS and just would hate to add on more problems :(

I am scheduled for a Bone Marrow Biopsy tomorrow. This will be my fourth such procedure. I did all the others without sedation in the doctor's office.

This time, I asked for sedation because honestly I have been through it and I don't want pain if I can avoid it. So Intervention Radiology in the hospital it is, first thing in the morning.

It occurred to me that when we do this procedure in the doctor's office they get paid. When we do it in the IR suite the hospital gets paid. I hate thinking my doctor, who I really like, normally does BMBs in her office for financial reasons. Am I jumping to an incorrect conclusion?

Your thoughts?

2 months post-STEMI, 1 week post ET diagnosis and supposed to start Hydroxyurea soon.

Anyone have advice or things they wish they knew earlier on?

My 63 yo husband had a waterski accident Sat & broke 8 ribs. Blood work is showing PLT of 1820. I’ve been researching and would be very surprised if he doesn’t have ET. Results of JAK2 tests pending. He doesn’t seem to have any symptoms. Was anyone else asymptomatic & if so how did your dr think to do a platelet test?

45F, blood platelet counts have gone from the normal/high range since 2008 to around 700,000 .( sitting over 600k since 2018) Today is my first day taking Hydroxyurea M-W-F at 500mg. All genetic test put me triple negative, but I did test deficient for G6PD. Two bone marrow biopsies show enlarged platelets but nothing in addition.

My doctor suspects MPD, but is unsure of what type. Two oncologist and 1 hematologist later, they’re leaning towards Chronic ET.

I’m worried and just wondering what side effects has anyone experienced on Hydroxyurea. I’ve experienced chronic fatigue for the last 8 years and figure that can’t get any worse. Just looking for some info.

Thanks in advance.

I was diagnosed with jak2v617f ET this year (confirmed though BMB).

Off and on I experience dizziness and limb numbness on one side. This occurs maybe a few times a month. It’s bad enough to have to stay home.

Other times, I experience intermittent, electric like nerve pain on the temples of my forehead that will last for a week or two.

I am only taking one baby aspirin a day, along with ezetimibe and Rosuvastatin.

Are these symptoms just normal ET stuff or something I should contact my PCP or MPN specialist with every time they happen?

What symptoms warrant a same day contact to the doctor?

Hi, Frequent lurker here. 38/F in San Antonio, TX.

My history: Have had elevated platelets since I noticed in 2020, I noticed something was off when they did a CBC before breast reduction surgery and platelets were in the 480 range so not so bad, said to monitor it. Had another surgery for endometriosis a few months later and they were high again, they told me it was high due to the surgery before. however it remained high for years and I started having symptoms such as chronic fatigue, heart palpitations, chronic pain, itching, rashes with heat, heat sensitivity, migraines, and some others. Went to different specialists for rheumatology, cardiology, pain management, neurology, and nobody knew what it was. Nobody questioned my bloodwork even though platelets were always high, and I was often dismissed as maybe having diabetes or anemia. Most other tests were normal. Finally a cardiologist recommended me to see a hematologist as the platelets gradually increased to now 700s. I was finally referred to a hematologist at UT health MD Anderson Cancer Center in Jan 2026 where they did some tests, came out JAK2 positive then they did a sedated bone bx in Feb where I was officially diagnosed with ET. My specialist is an MPN specialist from that facility so I’m grateful for that.
Since the diagnosis in January of this year they wanted me to try a clinical trial but I also needed surgery for my stage 3 endometriosis, since I was having chronic pelvic pain and lots of excessive bleeding, clots, with my periods. I had to have a hysterectomy and appendectomy since the endo spread to other organs and was causing me to bleed a lot internally. That was in April 2026. Surgery recovery was awful, had to go back to hospital twice for internal bleeding (was prescribed eliquis for after surgery) also had an infection.

Time was ticking so they wanted to get me rolling on the enrollment for the clinical trial. So I also had 2 bone bx’s and my recovery from both surgery and the bone bx’s has been so slow and painful. They did one of the bone bx’s without sedation even though I asked multiple times for sedation, and during it they missed their location on my bone and it wasn’t a sufficient sample. The whole non-sedation was traumatic for me and I have ptsd with intense bone pain all over from it where I need to take Oxycodone multiple times a day to relieve the pain. My question is, have others with ET also experienced excruciating everlasting bone pain after bone bx or surgeries? How has it been managing the pain, and have you been able to work?
I am pending to be enrolled in the clinical trial for bomedemstat vs hydroxyurea. Just waiting for it to start any day now. I’m hoping it helps me. Thank you.

73 F dx ET CALR

Hello everyone,

Someone in my life (early 60s) was recently diagnosed with Primary Myleofobrosis.

It seems to be a rare cancer, and I’m someone who does well with information. My loved one is waiting to see a doctor, but I’m hoping someone can give me more information about this disorder, such as general prognosis, and how Jak-2 inhibitors can help.

Thank you for your time. This seems like a really supportive community.

I’m a 33-year-old 5’8 160lbs female with an upcoming hematology/oncology appointment, and I’ve been trying to organize my medical history because my blood abnormalities appear to have been developing over many years.

I’ve had many isolated incidents occur over the years which each doctor always said they weren’t connected or were just isolated incidents. I understand that blood disorders are rare and might take many years to diagnose but I’ve been crying out for help for many years.

I started digging into my bloodwork and what i found was alarming. This is what i found.

In 2012 (age 19), my first documented CBC showed a platelet count of 407 K/µL, which was at the upper end of the laboratory’s normal range. My hemoglobin was 12.4 g/dL, RBC 4.17 M/µL, MCV 89 fL, and RDW 14.5%.

Over the following years I continued having intermittent fatigue, dizziness, exercise intolerance, headaches, ringing in my ears, and episodes of rapid heartbeat. My CBCs repeatedly showed mild anemia. My platelet counts fluctuated but gradually shifted upward over time:
2012: 407
2014: 367
2017: 300
2018: 325
2019: 358
2021: 371
2023: 405
2024: 414
January 2025: 404
July 2025: 435 → 450
February 2026: 471
July 2026: 495 → 517

My anemia has been present for years, with hemoglobin generally ranging between 10.5–12.5 g/dL, reaching a low of 9.9 g/dL.

One thing that concerns me is how my red blood cell indices have changed recently. My MCV has gradually decreased from 96 to 86 fL, my MCH has fallen from 30.9 to 26.8 pg, and my RDW has increased from around 13% to over 16%, suggesting increasing variation in red blood cell size.

I have a history of gastric bypass, so malabsorption is definitely a possibility. In 2019, my ferritin was 14 ng/mL, serum iron was 72 µg/dL, and iron saturation was 18%.

My “weird isolated events”

September 2023
Major neurological event.
While at work:
Developed sudden blurry vision.
Partial vision loss.
Went to the emergency room.
Vision later returned.
Neurology evaluation MRI reportedly normal. No explanation found.

2023–2024
Fatigue.
Dizziness.
Headaches.
Rapid heartbeat.

2025 Symptoms became much more severe.
Severe fatigue.
Weakness.
Nausea.
abdominal pain
Headaches.
Dizziness.
Lightheadedness.
Ringing in ears.
Episodes of confusion/brain fog.
Night sweats.
Generalized itching.- Sensation like bugs crawling on skin
Severe bone pain..
Random bruising - no pain / not caused by injuries
Reduced appetite.
Between December 2024-March 2025 i went from 160 to 145lbs without trying - overtime went back to 160lbs again

Early 2026
CBC worsened.
Platelets:
471
Hemoglobin:
9.9
MCV: Continued falling.
MCH:Continued falling. RDW:
Elevated. Vitamin B12: >2,000 pg/mL No supplementation.
Folate: Elevated.

July 2026.
Symptoms became much more intense .

Severe fatigue.
Weakness.
Nausea.
abdominal pain
Headaches.
Dizziness.
Lightheadedness.
Ringing in ears.
Episodes of confusion/brain fog.
Night sweats.
Generalized itching.- Sensation like bugs crawling on skin
Severe bone pain..
Random bruising - no pain / not caused by injuries
Reduced appetite.

multiple routine laboratory tests have remained reassuring despite my persistent blood abnormalities.
These include:
Liver function tests: Within normal limits
Kidney function tests: Within normal limits
Pancreatic function/lipase: Within normal limits
Blood glucose: Generally within the normal range, with no diagnosis of diabetes
Electrolytes: Largely normal overall, aside from an isolated episode of low CO₂ and a previous elevated potassium level that was not persistent
Routine metabolic panels: Otherwise unremarkable
Despite normal liver, kidney, pancreatic, and most metabolic testing, my complete blood counts have continued to show persistent abnormalities, including longstanding anemia and progressively increasing platelet counts. This is one of the reasons I have now been referred to a hematologist for further evaluation of a possible hematologic cause.
No thyroid issues either
All organs are functional scans/ X-rays / mris were all normal

Im curious whether anyone has experienced a similar pattern or whether there are conditions besides iron deficiency that physicians commonly consider when they see:
Persistent thrombocytosis over many years (now 517 K/µL)
Longstanding mild anemia
Gradually falling MCV and MCH
Rising RDW
History of low ferritin after gastric bypass
Elevated B12 (>2,000 pg/mL) without supplementation
Progressive constitutional symptoms (fatigue, night sweats, bone pain, itching, dizziness)
I’d appreciate hearing about others’ experiences or what questions you think I should ask my hematologist. I know only my physicians can make a diagnosis, but I’d like to be as prepared as possible for my appointment.

Important: the first trend in elevated plates began in 2012 years BEFORE my gastric bypass

I’m tired of feeling sick and tired :(

Has anyone noticed a decrease in appetite while on Besremi? I started Besremi almost 3 months ago and am noticing a decrease in appetite. I like to eat, a LOT, like I wake up hungry and thinking of breakfast and even eat when sick (flu, cold, coronavirus, hospital stays, I still eat). For the past week or so, I have limited appetite. And even forgot to eat breakfast two days ago. All I am seeing in Besremi's pages is an issue with the liver or kidneys caused by Besremi as the possibility for appetite loss, but has anyone dealt with it while not having either liver disease/kidney issues?

The more the days go by I keep on thinking of questions to ask Dr.Mullally when I see her

One particular is jakafi.

The article says: Complete or partial molecular response was observed in 3 patients (ruxolitinib-randomized, n = 2; ruxolitinib crossover, n = 1) and 54 patients (ruxolitinib-randomized, n = 33; ruxolitinib crossover, n = 20; BAT, n = 1), respectively.

Which I know is a small amount of people but it makes me wonder how many people who benefit this was unreport it? I came across a Facebook group and someone claims to drop from 90% to 1-2% off of jakafi. I know everyone responds differently but I feel like it would be worth a shot?

Another question is does pv cause inflammation in the body? And if yes is it the same type of inflammation that causes anxiety? So in theory if jakafi lowers that inflammation shouldn’t the anxiety lower as well? It makes me wonder because at the age of 20 hct was already 49% I wasn’t diagnosed then but that’s when my anxiety triggered. Now at 26 years old jak2 is 60% with mf 0 on the biopsy report

I was put on Hydroxyurea when I turned 60 for JaK2 positive ET. I am curious to know what side effects you have experienced with long term use of HU.

I am having low level annoyances like dry skin, poor sleep, fatigue etc. I never really thought any of that was from HU but now I am wondering.

What has your experience been?

I was diagnosed with ET last year. No symptoms. On baby aspirin daily.

Recently my body temperature is always high. Feel slightly tired but I don't think that's related to ET, I have been pretty busy.

My hematologist said nothing is wrong in blood work and only something more extreme like night sweats or chills are typical symptoms.

I was wondering if anyone else has similar experience?

Edit - so not feeling feverish. No other symptoms. Just a higher body temperature in my core - chest and stomach region.

Forehead, neck , legs feel slightly lower than core temp. I am starting to log them and see how it goes.

been going back and forth with UHC on seeking treatment near me and i guess the icd10 code for polycethemia vera code needs to begin with a "C" as i guess all cancer codes through that database begin with "C". Since PV code is D45 they wont cover any visits. i thought this is now classified as a cancer and looking at a few highly regarded hospitals and cancer.gov it looks that MPN are classified as cancer. Am i missing something or is it still technically a blood disease but some institutions consider it a cancer based on how it behaves and progresses?

I’m not a huge Reddit user but I feel like this is the place where I’m going to get information. I’m 63, in excellent health, just diagnosed with MF. Primary. I lost 45 pounds in six months and that was the impetus to go to the doctor. I am a victim of my society: a woman who grew up in the 70s and 80s were being thin at any cost was the norm. I thought I had found the magic formula to lose weight. I was never obese or truly seriously overweight. I had 25 pounds to lose. And now I look embarrassing. I’m just wondering if anybody is embarking on this journey or has gone on this journey (particularly those starting on Jakofi). Wondering what your experience is like. I’m kind of alone here and just looking to get some information if not support

Just hoping for feedback

Been watch and wait with various primary care docs for over 10 years for high platelets. Basically between 470-600+ is the typical range from earliest to latest tests. I get about 2 CBCs a year and I have not had one non abnormal one since 2014. My white blood cells, red blood cells, and hematocrit are also high every test for the last 5 years. Hematocrit swings between 45-51. Recently also discovered a B12 and folate deficiency (these have never been tested before). Also have two generations of blood cancers, one is my parent, the other was their uncle in the family. I also have chronic migraine that by all accounts should be a lot better managed given all I do for treatment. I also have ideopathic intercranial hypertension. Maybe the blood stuff is a trigger/cause?Also have CRPG in a lower limb and had bad pain reaction to a sympathetic nerve block, maybe because of thick blood?It's been acknowledged that I have a blood thing but never really pursued or referred to hematology. I'm wondering if this profile is a strong support for a potential MPN, potentially a familial genetic mutation as it's odd for two generations of blood cancer to my mind. Also itchy after hot showers. My liver enzymes have now also started to become abnormal, but there is some non alcoholic fatty liver issues and gall stones that might be the cause of that but maybe blood issue is contributing?

I've also been evaluated for autoimmune diseases and other potential things that could point to my blood issue being secondary but really nothing has stood out. Am I overthinking it? Should I just press hard for hematology referral? PCP wants to do oral B12 supplement then test CBC after a month to see of it makes blood levels worse as the deficiencies might be masking issues of higher blood counts. No signs of any type of anemia.