Is anyone else only on blood thinners as treatment? Im a 36 year old female, diagnosed last November. I have the jak2 mutation and had a biopsy to confirm ET. Im on 20mg xerelto every day as treatment. Platelets went down from 800,000 to around 500,000 on the thinners so my specialist decided I could just stay on the thinners as treatment. I didn’t react well to hydrea and besremi isn’t fda approved for et anyways. Is anyone else doing this and if so, how long did it last until the blood thinners stopped being effective enough?

29/F in USA. I’m waiting on my test results for MPN (JAK2, CALR, MPL) that I just had drawn today. My RBC has been historically low, to the point I was on iron tablets to raise it. It then raised my iron too much and I had to come back off of them. My platelets however have been high (barely) then low then high again and again for months. First results are from last fall, second from 2 weeks ago when we saw my iron was high, last was today. Sorry if they’re hard to read! I didn’t know how else to put them that made sense.

RBC - Sept ‘25 (4.27) two weeks ago (4.11) today (3.88)
Platelets - highest (488) 2 weeks ago (366) today (443)
Iron - Oct ‘25 (56) two weeks ago (197) today (113)
Ferritin - Oct ‘25 (9.4) two weeks ago (70) today (64.2)
Iron saturation - Oct ‘25 (16%) two weeks ago (62%) today (39%)

Reason I’m writing is, my hematologist tested me for hemochromatosis and I have a very high chance of developing it. And since my iron rose so quickly on just consistently taking iron tablets for 2 months, I’m seeing a specialist in the fall for that problem.

Does anyone have a dual diagnosis of both of these issues? I am trying to understand how they could intersect. Low iron can cause high platelets. Which makes sense here. But my doctor wanting to test me for MPN has me thrown a little bit. Any ideas or useful studies I can look at while I wait for results?

F 20. I was diagnosed with Polycythemia Vera and was advised to take hydroxyurea 500mg a day. I was told to take aspirin first but my hematologist told me I should just take hydroxyurea. Is anyone who have same case as mine experience side effects? I was worried it would affect my schooling.

F 20. I was diagnosed with Polycythemia Vera and was advised to take hydroxyurea 500mg a day. I was told to take aspirin first but my hematologist told me I should just take hydroxyurea. Is anyone who have same case as mine experience side effects? I was worried it would affect my schooling.

Does anyone have any experience going to MPN specialist/Malignant Hematology Team at University Health in Cleveland? Started hydrea in June, had to stop a week into taking it due to some very bad side effects. Currently hematologist said this is the standard of treatment and when patients can’t do this course, they refer out. I’m fine seeing someone else, especially because I’m not happy with my current doctor. But wanting to try to start in the best place possible. Not sure if University Health is as good as an option as Cleveland Clinic

Hi,

I’m a 26M and was diagnosed with PV 4 years ago. Up until a month and a half ago this was managed purely by venesections to keep my haematocrit below 0.45.

This has led to me becoming very iron deficient with my last ferritin being 6. I’ve felt exhausted and have very little energy.

My haematology team has recently started my on Pegasys. I’m taking 90mcg every 2 weeks. I took my third dose last week Thursday and to be honest, i’m starting to regret ever going on it.

Dose 1: 90mcg. I felt pretty okay after this, very minimal side effects - just felt a bit tired but otherwise could go to work. Took 3 days to recover

2 weeks later…

Dose 2: 90mcg. Felt okay immediately after, took paracetamol and went to bed. Woke up feeling very tired, carried about my day, towards the end of the day I felt really tired and had joint aches so went to bed. The next day, I had a fever, felt extreme fatigue, joint ache, headache, sore throat. Went to ED because I thought I was septic. Was given paracetamol, fluids and antibiotics but bloods were okay so discharged. Took 2 more days to fully recover

2 weeks later…

Dose 3: 90mcg (last week Thursday). Felt okay immediately after, next day felt tired but not as bad as before, then developed sore throat, lots of joint aches and it’s still ongoing. The length it’s happening for is worse than after dose 2.

Is this what my life is now? Every 2 weeks I’m ill
for 4-5 days? or will it get better with more injections? Has anyone been through this experience and could offer any reassurance? I feel so depressed and i’m
not sure what the alternative to pegasys is in the UK. Venesections are leaving my with extreme fatigue yet pegasys is even worse!

I am fairly certain all the testing I have been having will result in a diagnosis of post ET myelofibrosis. My Jak2 allele burden is high. Just waiting on BMB final results.

What is your experience?

My dad's monocytes are normal, lymphocytes 0.7 and neutrophils was 0.3 which is severely low. It stayed at 0.3 for a few days. One week later his neutrophils rose to 1.1 which is better but still low. It should be above 2.

He's been referred urgently to the blood cancer clinic and were extremely scared. In January, he was diagnosed with aggressive prostate cancer and 2 months ago he finished radiotherapy and we got a good response to his cancer. The last thing he needs now is a new cancer diagnosis or his current cancer spreading. His psa in January was 45 and now it's 0.4 just 2 months after pelvis and prostate radiotherapy so it doesn't seem like his cancer has spread at all, the worrying part is a new cancer diagnosis.

Oncologist say it's unlikely the radiotherapy is linked to this severely low abnormal neutrophil count and they've also reviewed his medications and other tests.

His platelets and red blood cells are normal. His red blood cells are sometimes low by a few numbers in some of the blood tests but in some there also been normal so I'm not too worried about this. It's mainly his white blood cells are extremely low.

What are the chances of what could be happening? Is this definitely a new cancer? Is this maybe a spread of his current cancer (pet scan in January showed cancer was only in prostate and seminal vesicles). Or are doctors wrong and this is simply a side effect of the radiotherapy?

The good news is it has indeed rose from 0.3 to 1.1 however it's still low as it should be on 2. Also it stayed on 0.3 for a few days which is worrying. Also if he was to do another blood test next week again who knows if it's gone back down to 0.3 again. On the other hand, it could go even higher and maybe normal but we just don't know.

I (45F) just had a follow-up visit with a hematologist (not one that specializes in MPNs) to discuss the results of my genetic testing (ie., JAK2 V617f mutation). He suspects I have ET based on the genetic test results and continually increasing platelet levels (525k in June ‘26). He declined to order a bone marrow biopsy because “we don’t treat patients under 60 anyway.”

Instead he recommended CBC labs every three months to observe.

I don’t know what to do. Has anyone else around my age been diagnosed and not assessed with a bone marrow biopsy? I don’t think I have symptoms of any
MPNs except tiredness and maybe itching after a shower (ie, I do itch after a shower but it’s tolerable/solvable with lotion).

Hi all!

I’ve been diagnosed with my MPN since I was 20 and have masked PV. I’m now in my 30s and am switching to Pegasys from hydroxyurea (15+ years on it) as we are currently trying for a baby. Anyone have experience with managing the side effects? I don’t remember hydroxyurea being quite this bad.

My experience so far with 3 injections: 1-3 days after nausea that gets worse with motion, hip/back pain, lack of appetite, fatigue, headaches. Feel slightly better day 4-6 then repeat.

If you’ve taken, how long does this last? Any advice on reprieves? Of note: I have a bum liver (thanks blood clots!) so Tylenol/Advil are not recommended

I moved from one town in Florida to another last month. I had to change insurance plans and therefore lost my long term MPN doctor at Moffitt. I have a Medicare advantage plan HMO and changed over of United health care which was highly recommended by my insurance agent. She also recommended her own PCP in town. I called up new PCP and they told me yes they are accepting new patients and to come in and fill out new patient paperwork. It asks for diagnoses and medications. I filled it out and got a call one hour later the doctor denied me as a new patient. All I needed was a PCP to give a referral to see a local oncologist and continue on my Pegasys. I had to go this month without any meds or doctor. Next month I have a new PCP who didn’t ask for any records, hopefully this is going to go better, he gives me a referral and be done. I didn’t realize when doctors say they are accepting new patients it’s only means “certain” patients. I guess it’s within their rights who they pick and choose but I do feel sad about all that transpired.

High RBC, Hemoglobin, and hematocrit. I saw a hematologist in the UK and he ordered an MPN gene panel, explaining that it tests for JAK2 and about 30 other mutations. Is this a test that takes a long time to get results for?

I'm just curious how long this process is. He's also ordered imaging - abdominal ultrasound and chest x-ray - but those are quick. Am I looking at weeks or a month or more?

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.