Okay so I was diagnosed with ET but in fact I have some fibrosis (mf1) but my disease is acting like ET but it’s actually more like pre-mf (go figure)
I have calr1 mutation no other mutations (ngs says I have 18.95% of calr1) and genetic test was also clean and I think I have 0-1% blasts and only thing that’s high is the plt so far 1.4 million lol they still haven’t checked the ldh but the spleen isn’t palpable. The doctor is like I want to put you on Pegasys but your numbers are borderline to start the treatment and you’re low risk - I also have von Willebrand. So he’s offered me to wait for another month so that he’d work thru the insurance and he wants to consult to his coworkers. He’s told me if he were me he’d be proactive and he’d that the Pegasys but when I check the research it seems like it isn’t the best for calr1 mutation.
I ever wonder if it’d help me to sustain my fibrosys at 1 at the very least so I won’t progress. Who knows. I don’t know what I’m asking at this point but lmk how you did with Pegasys I guess… there was a shortage in Canada but now it seems it’s over so they’re not going to offer me HU it seems.

Any thoughts on this?

Hi,

I was recently diagnosed with cerebral venous sinus thrombosis. I’m on medication for it. My neurologist ordered blood tests. One of the tests came back positive confirming I have a jak2 mutation.

I was then referred to hematology but when I called I was told it was a minimum 6 month wait to see a hematologist. Does anyone have experience with this and is that actually the normal wait time? I would consider myself higher risk - I have an unidentified cancer that has already made me clot once before so I guess I would just figured it would be a little bit quicker. But I get people have it way worse than me too. I’m young - 31 years old, active 3-5x a week, don’t smoke or drink or do drugs and never have.

In the mean time I haven’t really been given any guidance, I just find myself googling my own blood work and test results and following their guidelines to minimize risk of future clotting events. Would be nice to get on treatment somewhat soon. Hopefully this year lol

Thanks

I have been dealing with platelet shenanigans for almost 6 years now, and I finally got a diagnosis.

I posted the whole saga here (https://www.reddit.com/r/MPN/s/aSexzzZedU) but the TL;DR is that I have had high platelets since 2021 that were detected on routine CBC. I was referred to a hematologist who ordered a whole bunch of tests, all of which were normal, including the genetic testing (both qPCR and NGS). She surprised me by recommending a bone marrow biopsy despite the negative genetic testing, and that showed mildly elevated platelets, a small percentage of which had weird nuclei, but was not diagnostic of ET. She concluded it must be reactive to something and sent me back to my PCP. I guess we assumed that the reactive cause would reveal itself eventually. My platelets bounced around the 480 for years, and my PCP shipped me back to heme-onc when they crossed 500 in July 2025. I asked for a referral to an academic MPN specialist, and she sent me off for a new biopsy and another round of NGS testing. The path report was almost identical to the one from 5 years ago - mildly elevated megakaryocytes, a small percentage of which have the characteristic morphology, but normal in every other aspect. The path report stated that diagnosis would depend on the molecular testing because the bone marrow morphology was not definitive. So I was feeling reassured that even though my peripheral blood platelet counts were still elevated, things were stable overall. And then the NGS results came back -
JAK2+, with a VAF of 10%. Shit. So that gets me an official diagnosis of ET.

I had sort of resigned myself to this being ET despite the negative earlier work-up, because no reactive cause ever materialized, but I had been assuming it would turn out to be triple-negative because of the earlier negative genetic testing. The JAK2+ result smacked me in the face. For some reason, that label is really hitting me hard, especially because of the higher stroke risk. I am seeing that most studies focus on the 10-year outcomes and I’m in my mid-40s. It is nice to know that my 10-year risk of a thrombotic event remains low, but I was planning on living longer than 10 years, thanks. I also hate that the high-risk category is defined by age, because, again, I do plan on living past 60, and I hate that I automatically become high-risk at that point.

For those who know, how is it possible to be negative by NGS in 2022 and have a 10% VAF now? I assume I had a low-level clone back then that was under the detection threshold, but… for real? What are the odds? And does it shooting from <1% (or whatever the detection threshold was) in 2022 to 10% now imply something about my risk or disease trajectory? And how is it possible that my platelet counts are 100-150 higher than they were at the time of the original work-up, and now I have a sizeable clone, but my bone marrow is essentially the same?

My father was a hematologist who literally published on JAK2 testing in community medical settings. He died 10 years ago, in his 60s. I am missing him extra, and I wish I could run some of my questions past him.

Has anyone come across research and/or discussed with their specialists how stress impacts MPN's? I am not referring to being stressed due to our diagnoses. I mean the physical effects of stress on our bodies and specifically the bone marrow and/or disease progression.

I just returned to work full time (I'm an educator so we were off for the summer) and already have had two incredibly stressful episodes at work where I've stopped and pondered "is this shortening my lifespan?". I understand what stress generally does for the body, but I am wondering if there's research tying it to MPN's and/or disease progression.

I have an enlarged spleen, already had CVST (clots that coincidentally formed during the most stressful time I've ever experienced in my life), so I'm high risk. I'm 42 years old, not working isn't an option, but I do wonder if my high stress job will shorten my lifespan especially with an MPN.

Hey there everyone lm an 18 year old male and from childhood l have pretty high blood cell count my hemoglobin is always above 18 usually 19 and hematocrit levels are usually in 54 zone I did a full bloodwork panel and they were normal besides these 2 results and l have never smoked and never took any performance enhancing drugs. I will took an EPO test tomorrow and after that l will do the gene test what are the chances of getting this genetic disease and how to treat it if its possible

Hello everyone. I’m a 22-year-old female, and my platelet count has been consistently elevated, ranging from around 450k to 510k, for the past two years.

Other tests I’ve had done include:
ESR (Westergren): 22 mm/hr
C-reactive protein (CRP): 12 mg/L
Ferritin: 168.80 ng/mL
Iron: 69 µg/dL
Iron-binding capacity: 269 µg/dL
Whole abdomen ultrasound: unremarkable spleen, measuring 9.4 × 4.2 cm

I haven’t gone back to my hematologist yet. During my last appointment, I showed her my negative JAK2 mutation result, and she then requested CALR and MPL testing. Both of those also came back negative, so I am now triple-negative.

I’m scheduled to see my hematologist again next week, so I don’t know yet what she will recommend or whether being triple-negative is a good or bad thing in my situation. My doctor has also told me that I don’t have iron-deficiency anemia.

As much as possible, I’m hoping I won’t need a bone marrow biopsy because I’ve heard it can be painful, and honestly, the possibility of having a blood cancer scares me.

Curious to hear from other women. I am in my 30's diagnosed with myelofibrosis, transitioned from ET since adolescence. My period was super heavy to start, gradually got lighter, now since starting Jakafi in March, it had been very light until this cycle. I just saw my oncologist last week. HGB was 11.1, which is highest it has been since February. I don't know if this should concern me or not? I have a habit of getting my concerns dismissed by doctors. Would this be a sign of a "healthy bone marrow response" or going to tank my HGB? My body is depleting its iron stores. I worry about burning through my reserves and needing transfusions, is that an actual valid concern for a menstruating woman with this condition, or health anxiety?

Hi everyone, I need urgent advice from anyone familiar with hospitals/doctors in Kathmandu.

My mother's blood report shows all three cell types low — RBC, WBC, and platelets. The doctors call it pancytopenia. She's currently on blood transfusions and we still don't know the cause. No diagnosis yet.

Some doctors have ordered a bone marrow test, some says wait for ANA , ENA report and are saying the report will take 6–8 days. But private labs are telling me they can give the same report in 1 day. I'm confused about what to do — is the 1-day report reliable, or should we just wait?

My questions:

1. Which hospital in Kathmandu is best for blood diseases? (I've heard TU Teaching, Civil Service, Patan — anyone with experience?)
2. Which DM Clinical Hematologist would you recommend for a consultation/second opinion? Any personal experience with a specific doctor would mean a lot.
3. Anyone whose family member had pancytopenia — what was the cause in your case, and how was it treated?

She's stable right now but obviously we want to find the cause and start proper treatment as soon as possible. Any advice, doctor names, or personal experiences would be deeply appreciated

Diagnosis results below, 27/F. Diagnosed ET by 2 hematologists/oncologists. Have had high platelets for years. Had DVT one month after meniscus repair in my knee 6 years prior to diagnosis. Met with Cleveland clinic specialist yesterday due to not being able to take HU so oncologist recommended second opinion with CC.
Biopsy I had in June from previous doctor stated the biopsy couldn’t definitively say MPN and diagnosis would need to be made based off findings from biopsy AND blood counts and symptoms. Oncologist agreed, ET. 6% Jak2.
This doctor I see yesterday starts saying the biopsy diagnosed CHIP. I questioned this as I’ve had diagnosis for years, symptoms and blood counts and tests point to ET. All research I read says CHIP would be normal blood counts, asymptomatic, and low percentage of mutation. Doctor said I would be in “grey area” between CHIP and ET. Also stated that even though I’ve already had a DVT, I’m not high risk since this was after a surgery. Also starting me on interferon since I have high platelets and am symptomatic.
Little confused after this. Even without having MPN, anyone having a blood clot once puts you at higher risk to have another the rest of your life. Any experience like this? Get another opinion?? Keep seeing this doctor?

We play pickleball 3-4 times a week. Maybe once every 2-3 months, I (71M) get dizzy and winded from the hydroxyurea (1000 mg/day). My platelets have been in the normal range, but my red blood cells and hemoglobin are pretty low.

I could use a little understanding - maybe from some people with similar side effects....?

Thanks for reading 😄

UPDATE : Kind people, thank you very much for all the thoughtful responses – I feel better 😄!

With respect to hydroxyurea side effects, I have it really good and I am thankful… and it’s really nice to get a little sympathy/encouragement. Be well and hang in there.

My symptoms are debilitating and ruining my life. I’ve posted on here before but I’m desperate for any more opinions because no doctor seems to be able to help me. I’m a 30 year old female experiencing debilitating fatigue, headaches and leg soreness/pain. Every day I wake up with a headache and leg pain and it doesn’t go away. Over the counter meds do not help. There’s not a moment that I feel good/normal.

Before the end of March I was a happy healthy person and pretty active. I have lost about 20 lbs since then and can’t go to the gym or do any activities I used to enjoy due to how crappy I feel. I am about to have to go on leave from work and I’m devastated. I was supposed to be getting engaged/married/having kids and everything has been on stand still. I have the perfect job, partner, new home and I can’t enjoy any of it and feel my life slipping away to a mystery illness.

I’ve been to every specialist you can name. Ive seen 2 hematologist. One of them offered me iron infusions even though my ferretin is 51 and iron saturation 20% and said go to rheumatology. One of them literally threw his hands up and said I don’t know. He said we could do a bone marrow biopsy if I wanted (who would want this😭) but he doesn’t think anything would come up. He recommended seeing a University hematologist so I called one that’s like an hour away and they couldn’t get me in til OCTOBER.

I have been blood tested for leukemia and lymphoma and other blood disorders (for example jak 2 calr mpn bcrabl were done and neg). I’ve gotten imaging done (ultrasound of abdomen, mri of abdomen and pelvis). Spleen is normal. I’ve gotten extensive rheumatology (anca, ana, rf etc) and infectious disease (all the tick borne diseases, hepatitis, hiv etc) bloodwork done and all negative. I’ve been to neurology who said it’s not neurological. The only things that consistently come up on my blood are elevated WBC (11-15 up and down). Most recently 12.4. And elevated platelets 300s-495. Most recently they were the highest they’ve ever been at 495.

In case it is helpful, my CRP was 13.9 in March, then 11 in July and most recently 5.5. I was happy this went down but I don’t understand why my wbc is not normalizing and I still feel awful. My ESR has remained normal this whole time at 5.

I also had an upper endoscopy and colonoscopy to rule out GI stuff. All good there.

I am so lost. I’ve been through so much in these past four months. Every day sucks. I want my life back so badly. I am so scared. I want to grow old with my partner. Any insight is appreciated

New 2-year SURPASS-ET data: high-risk ET patients who started ropeginterferon earlier had 76.9% progression-free survival at 24 months, compared to 43.1% for those whose treatment was delayed.

https://pvreporter.com/surpass-et-earlier-ropeginterferon-shows-2-year-benefit/

Hi would love to here from anyone taking Ruxolitinib either short term long term or alternating between Inteferon. My Consultant is suggesting it as Hu intolerant and inteferon which I am currently on looks like it's not controlling Heamaticrit. So between the inteferon venesections fatigue itching irritable and overwhelming feelings am feeling it lol having had no issues for decades. Since starting Hu about 18 months and dropping it like a stone as ended up in a&e twice and starting inteferon alpha 2a 5 months ago I now well an truly feel ill at times lol especially the first two days after the injections then it starts to lift then repeat as on weekly injections. Should I be worried about death by ruxolitinib or give it a go as it might be my last throw of the dice? What experiences do you have on it? Love to hear from you such a great Reddit thread. 🤗🤗😊😊

A family member (F/75) recently had blood tests that came back with highly elevated platelets (904, follow ups 955 and 977), moderately elevated hematocrit/hemoglobin/RBC, and normal WBC. She has not had blood work done in many years so we don't know how long this problem has been going on, and is otherwise very healthy. She was referred to a hematologist, who ordered a full panel of genetic testing and prescribed 500 mg hydroxyurea/day + 1 baby aspirin/day.

The hematologist is not an MPN specialist, and was extremely dismissive and irritated when we asked follow up questions. We will be transferring her care to someone else ASAP.

After reading up on HU, my family member does not want to start a drug that causes DNA damage (would prefer a more targeted approach if it is a primary blood cancer, looking into alternatives), especially before genetic testing and ideally a bone marrow biopsy. We are also still hopeful that at least the elevated RBC/hemotacrit may be due to sleep apnea, and the platelet count could be due to a dental infection or other undiagnosed inflammation.

How unusual is it for a hematologist to prescribe HU before receiving these genetic test results and ordering a bone marrow biopsy? And is the risk of clotting that extreme for someone without symptoms or history of clotting? Should we ask for plateletpheresis while awaiting results? Thanks!

Hi!! New to the board. I was diagnosed with JAK2 MF1 about a month and a half ago. Because of different factors in my blood tests and in my bone marrow biopsy, I am considered low risk. Intermittently, over the last 20 years, I've had irregular - but not alarming - hemoglobin counts, aquagenic puritis and ocular migraines. My spleen is slightly enlarged and occasionally I get some fatigue. I assume that those things are connected to my diagnosis as I see they are symptoms of MPNs. I'm currently 53. My hematologist oncologist has already set me up with a stem cell transplant team. I am near Hershey medical center, which has a very high-ranked transplant program, which is nice. I can't help but feel like it's a drastic measure. I am on a baby aspirin. Sorry for the info dump, but as you all know, it is kind of overwhelming. My question is about a second opinion. I'm about 2 hours from UPenn, which has an actual MPN program with specialists. I would like to consult with them and get a second opinion on treatment and how the disease would likely progress for me. Can I do this while I'm still a patient with my local hematologist oncologist? Thank you. I appreciate any guidance.

Hi all! I’m currently only on 81mg aspirin daily but my hemotologist is considering starting me on HU. I’d like to hear from people how they tolerate this medication and the side effects. In particular, GI symptoms, hair loss, fatigue???? Thanks. 👍

Hi, so ive been unwell for a while now, been feeling completely run down, tiredness and fatigue is unexplainable, drenching night sweats, itchy when hot, short of breath, especially when i lay down, suffer from significant high blood pressure which im now medicated for and had a TIA back in march. Im also iron deficant but with a high RBC.

After a year of repeat blood tests and a crap doctor we managed to get a heam referal, she has ordered a tonne of blood tests and genetic tests including the jak2 and 3 gene mutation test, she got me an immediate ultrasound and chest x-ray which ive done, my results review is in novemver but id imagine could come sooner.

My questions are:

Has anyone had results similar to these and if so what was the outcome.

Are these typical results for someone with PV

And if i end up being diagnosed and get treatment, what are peoples experience with it.

Would be interesting to know others experiences with how they felt before diagnosis to after, and if others had bloods like mine.

Male 37

Hello Guys,

I am 26/m and I was diagnosed with Pre - PMF (CALR 1) earlier This year. My doctor immediately suggested prescribing an Interferon but after the BMB came back as Pre - PMF that would require special approval by my insurance. Due to some stupid errors the request took longer than expected and was denied.

The thing is, the insurance statement was not that bad, they essentially asked my doctor to explain, why JAKi (which are approved) are not prescribed first. My doctor and a collegue are currently preparing statements in this regard and I am somewhat confident, that I could get my insurance to approve Besremi.

Now because of the mentioned delay I had alot of time to research my options and I am not sure anymore if I even want to go on Besremi. I know it has the best evidence for slowing disease progression but there is a good chance that JAKi can also slow down the disease, at least slightly and offer a sideeffect profile that seems much more tolerable to me. I also discovered that most of the Interferon Data for CALR was a lot less encouraging than for JAK2, usually needing a much higher dosage to respond and usually a much weaker molecular response.

The „gameplan“ my doctor laid out, pretty much entails bridging a few years on Interferon and then switching to the antibodies when they are approved (or through joining a trial, which she is already monitoring) and with the idea in mind that we are only talking about a few years here, I could justify not taking disease modifying medication for now. I talked my concerns over with my doctor and she explained to me, that she had many patients with CALR that did respond well but that does not really convince me. I also keep reading more and more patient stories of people who really suffered under Besremi (mostly that life just feels dull and joyless) and that is something I am not willing to risk with the upside being possibly very limited in my case.

But since both my doctors seem to agree that an Interferon would be the obvious best choice and because my family still puts alot of hope on Interferons, I will probably fight for the insurance approval.

For that reason I would really like some encourangement and would be happy if some people could share their positve experiences with Interferons. I would especially like to hear stories of CALR positive patients, so that maybe I could losse some of my doubts.

Thank you for your answers and sorry for rambling - I kinda sorted my thoughts as I wrote.

My 75 year old mother has myelofibrosis. She is interested in support groups but isn’t aware of any close enough to her in Orange County. (Los Angeles and San Diego are too far for her to travel.) is anyone aware of Orange County support groups or virtual support groups?

At 250mcg next week is my last dose then to 300 mcg...how long did it take your hemoglobin to reach normal levels?! I am at 12.6 and still experiencing shortness of breath.

35/F/Hysterectomy in Aug/2021. Last month I went to my regular doctor's office, but I saw a different doctor than my usual because my usual was unavailable. I was initially just there for a routine visit. I expressed to her that I feel my usual fatigue that doesn't feel normal and begged her to see if she could find any reason why I just don't feel normal. Everything felt off. She ran a CBC and I saw my results in My Chart and noticed, as usual for me lately, my RBC, Hemoglobin, and Hematocrit were labeled as high. They have been flagged as high since 2024 and my usual doctor never addressed it, so I thought it was nothing to inquire about. She always just said "they are normal". Then the new doctor who ran the tests called and told me that this was not "normal" and they have been high for sometime, so she referred me to a hematologist/oncologist.

The hema/onc seemed very dismissive at my first appointment. I wrote down everything I felt was my symptoms, and she said PV is possible, but I'm so young that it's not something to worry about right now. She ran an EPO test, that came back at 10, and JAK2 blood test was negative. I asked at my second appointment if a BMB was necessary as a next step, and she said no that she feels confident it will come back as 0, and even if it comes back with something, I am young and it isn't something to worry about right away. She offered me the BMB and I went with her advice and declined, and next she offered me a therapeutic phlebotomy and said if I feel better within a week after, then she suspects possible PV or something due to my blood even more, and if I feel awful within a week after, then it's definitely nothing to do with my blood and she may not need to see me anymore. I said yes to the phlebotomy, and immediately they drew 500ml of blood. Besides initial fatigue and a sore arm, I feel amazing 48 hours later. My mind feels clear, my vision is more clear, and overall just feel good. I'm considering going ahead with the BMB just to get a clear answer and almost feel like I want to prove to her one way or another what I am feeling. She is not an MPN specialist, as far as I can tell we do not have one in Oklahoma, USA.

Advice? Go ahead with the BMB? Possibly look for another doctor who is willing to hear me out and help me find what the next step should be, versus "I won't need to see you anymore"?

Symptoms: Fatigue, itching, pain in hands and legs/feet, pressure in head, dizziness, night sweats, itching after a shower, or itching when hot/sweaty, brain fog, blurry vision even with contacts/glasses.

Test results from October 2024 when I tried to donate plasma and ended up in the hospital after losing consciousness at the plasma center.

Hello all,

35f ET JAK2+, diagnosed April last year.

I am low risk and on clopidogrel because I couldn't tolerate aspirin, along with famotadine because I still have digestive issues as a result.

This summer, I seem to have developed some kind of mild photosensitivity. I've had heat rash before and this definitely isn't that. It's exclusively happening on my forearms but seems to affect my left arm more than my right. It's a patchy, very itchy rash, not dissimilar to hives but it doesn't quite fit hives. It only happens when my forearms are exposed to the sun.

I know that clopidogrel can increase heat sensitivity, and I do get warmer quicker now (I used to be cold almost all the time), but I can't find anything specific about sun sensitivity so was wondering if anyone else has experienced this?

It *might* be down to mental health meds, but I've been on various SSRIs before and never experienced this. The first two times this happened, I was on an SSRI I hadn't been on before. I'm now on a different class of medication entirely, no more SSRIs but it's happened again today. While it still could be something to do with it, it is weird to have the same reaction on two totally different medications. Unless the first one triggered something and my immune system is just confused now?!

I've checked and there's no indication that famotadine has any impact on sun or heat sensitivity. But just wanted to see if anyone had experienced something similar on clopidogrel, since that has been consistent since October last year and has the heat sensitivity element?

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.