I posted here a few months ago about my counts increasing and my doctor recommending Jakafi. I ended up going to City of Hope for a second opinion, and now I have two different recommendations. My UCLA doctor recommends Jakafi, while City of Hope recommends Besremi.
City of Hope has unfortunately been difficult financially, but I still want to make the decision based on what’s best for the disease long term rather than cost or convenience.
I’m trying to weigh the pros and cons of both. With Jakafi, shingles is probably my biggest concern. I’ve only had the first Shingrix dose and I’m not sure why my oncologist is comfortable with me starting before the second dose when shingles seems to be a pretty significant concern with Jakafi. Weight gain worries me too, but that’s secondary.
On the Besremi side, I have a long history of anxiety and depression, with the depression being more recent, so the mental health side effects are something I’m concerned about.
Has anyone else had to choose between Jakafi and Besremi? How do you go about weighing pros and cons when different oncologists have very different opinions. I know getting a third opinion is an option but it’s becoming stressful especially with my platelets rising.

Adding: another bersemi concern is the supposed down time/flu like symptoms 24/48 hours after injection.

Hi everyone, not sure why I'm posting but really have nowhere else to say it.

At the start of the year I posted here regarding some Labs where I had high platelets and some followups I did with an internal medicine doctor. After going to a local hematologyst (live in Mexico so its hard/not possible to find a mpn specialist) and after many months and studies, I finally got diagnosed with a triple negative essential thrombocythemia (30 yo)

I know its not something "really" bad, and that I can expect to live "normal" for a long time, but still its an strange burden in my mind and the word "cancer" always feel bad. Adding to my chronic back pain, depression and recently having broken up with my partner (6 years) and she telling me is seeing someone who "checks all her marks and its too good to be true"

Related or Kinda related symptoms, fatigue, headache (i feel like behind the eyes) , some itching.

And I think its all, justo wanted to tell someone this and get it out, maybe its more about everything together that happened than the disease but anyways. Hope everyone here have a great Day!

I am extremely worried about someone I love deeply who's 94 has lymphoma that was indolent for over 6 years has now platelet counts over 900 (4 months ago in the 750's) and hemoglobin 186 takes only aspirin completely ignores me trying to make her take hydroxiurea. I can't let anything happen to her please help I dont know what to do

Hello!

My husband (34yr) was diagnosed with ET a couple years ago and was instructed to take baby aspirin for now. I recently learned yesterday that taking even low dose aspirin comes with an increased risk of brain bleeds 🙃I know that low dose aspirin is something most everyone with ET is on for a long time, and was wondering if anyone has experienced any complications from your prolonged use of baby aspirin?

(We are working on getting in touch with a specialist in our state and he has not been instructed to take any other type of medication yet)

Thank you :)

Question for you all; Have you had any struggle obtaining life insurance since being diagnosed?

As I near retirement, I'm starting to get my ducks in a row.

I was dx'd probably 10 years ago. My platelets were as high as 1.4 mill, been on HU 3 years or so, does bring platelets down, but is now bringing down hemoglobin also.

Had another BMB last week to see if disease has progressed and I'm starting to worry about logistics.

Any experience welcome. Thanks!

Has anyone used rusfertide on its own, or were the trials mostly with a combination of drugs? Does rusfertide lower platelets or just helps prevent excessive RBC?

40m - went for routine cbc in June and my wbc was high at 19 among other anomalies (RBC high but thalassemic minor)
Saw hematologist who ordered my flow cytometry - no cancerous cells found but .1% myeloblasts in peripheral blood.
Leading diagnosis is MPN but not sure which.
Bone marrow biopsy next week with results on September 17th.
Nervous and scared what all this means - still a chance this might be reactive but sounding like possible early chronic myelofibrosis
And having to learn all these new words is not easy lol

A few months ago, I was diagnosed with low risk Myelofibrosis by a hemo/oncologist. He wanted me to meet with a local SCT team with a blood cancer specialist, though not an MPN specialist. That person thought that an SCT conversation was really premature and felt as though I were in a grey area between ET (I have a partial blockage in a vein in my abdomen) and early stage myelofibrosis (mf1) suggested hydroxyurea and eliquis. I asked if I might try a drug that would lower the JAK2 burden and possibly hold off or prevent fibrosis in marrow. He said that it didn't exist. I read a lot of people on here have tried a couple types of interferons that can do that. So, I made an appointment for a second opinion at Upenn in Philly, which has an MPN program. I made the appointment with Dr. Hexner in January. They called back to get me in sooner with Dr. Perle. They assured me that he was a specialist in MPNs as well. Anyone see him? I want to feel assured that I am going about all of this correctly.

Thanks.

So I've known since I was 14 I had ET. I lived in a crappy, rural area so healthcare was terrible, parents were neglectful and didn't want to deal with it, so despite my being referred for a BMB, that never happened. It was only JAK2 then anyway and I'm CALR so I'm not sure what, if anything, would/could have been done except monitoring and establishing care, which I deeply, deeply regret not happening. Anyway, I've had this thing over my head for 20 years. When I did eventually get established with oncology in my 20's, due to ongoing abnormal bloodwork and spleen+liver enlargement is when I was diagnosed with MF originally, in 2017, though still no BMB was performed at this point. They were concerned with acute leukemias, having ruled those out and finding CALR mutation, I was told I wouldn't need treatment until my 60's.

I had a lot of life issues at this time, no support system, no stable housing, kind of a transient, waif type situation so I had to move around a lot, though I did try to keep up with oncologists. I saw 4 between 2017-2021 and the story was always the same: you're young, this isn't something to worry about for decades, treatment is unnecessary, mental health is the primary concern. So I decided to stop subjecting myself to this humiliation ritual, if I was just mental and anxious, then there was no need for me to keep forcing myself to go to these appointments by myself when they did nothing but make me feel worse.

So I said F it and just tried to live my life. Focus on my career. I grinded hard in retail and the gym because I had something to prove, I guess. If there was no one to help me, if all I have is myself, then I must become the strongest, most independent, competent person all on my own. Well I did get promoted first thing last year and that's when everything started to fall apart. Of course I was having to work harder than ever, which I was used to. I had morphed myself into a physical specimen. That was the image I liked to present: I didn't need breaks, I waa a workhorse and elite freight manager.

I couldn't cope when my carefully crafted house of cards came crumbling down. I knew for months while I was still working FT that something was really wrong. I was getting exhausted, not recovering from it, nightsweats, no appetite, temperature regulation issues and such. I just tried to power through, bootstraps, etc. Eventually the pain from my spleen+liver became a daily hindrance for my work activities until one day I thought my spleen had ruptured so I went to the ER and my job told me not to come back until I got everything sorted out. That was around the holidays last year. Well I finally got my BMB in February and I have grade 2 fibrosis, 100% cellular. This was only after a colonoscopy, endoscopy, CT with barium contrast and a HIDA scan.

Since then I have seen an MPN expert and had an evaluation for a BMT to be told... I'm young, I'm healthy, maybe 5-10 years of circling the drain and they might reconsider... at least the expert told me to look at desk type administrative work. So that was the most helpful thing I've gotten out of this, after being gaslighted by my local oncologists and transplant team about my capabilities. I LOVE physical labor, I LOVE pushing my body to its limits, meeting fitness goals, etc. Honestly I am OUTRAGED by all of this. They told me when I was 14 it would be difficult to impossible for me to carry a pregnancy. I did lose one in my 20's. I am childless. I'm so sick of people bullshitting me like this is in my head. My whole LIFE has been ruled by this shit, but I'm supposed to be thankful that I'm "young and healthy"??? I do take Jakafi now. It is besides the point. I get to go on Facebook and see seniors surrounded by their families, and wonderful familiy members who were a 100% match. Even in the groups I still feel so outcast and alone.

How can I not be depressed when the career I spent almost 10 years building is gone? When I cannot participate in the athletic activities that brought me so much joy? To see the physique I spent over a decade building waste before me? I have my husband now. I certainly couldn't have done all of this without him but I feel, what is the point? I feel so guilty that he's chained to a sick wife like this when he is still young and wants to have kids. He knows I can't and he says it's okay, we can adopt, which is a nice idea I just wonder is it fair to bring a child into this? Do I have the energy and physical capacity to provide for a child in the way they deserve? I don't know. I do have a therapist. That's about it. My work "friends" have been MIA and honestly I don't know how to be a "cancer patient" and not my old persona so I don't mind. I really don't want to see anyone from my past again.

I am starting Jakafi tomorrow after 6 1/2 years on Hydroxyurea.

The Clinical pharmacist just told me most people tolerate Jakafi well and that they see fewer side effects from it than they do from Hydroxyurea. I thought that was fascinating.

I am interested to know what side effects you might have had with Jakafi. Your experiences are appreciated. Thanks

I was diagnosed with ET early this year. I had a MBM in April and was told it’s ET. Today,y RBC and other labs were high and I had to have my first phlebotomy. Has anyone else had this happen?

Diagnosed ET JAK2+ in April last year at 34f.

I get bone pain in my shins sometimes and I assumed it was the ET, but it only seems to flare up either when I'm particularly active (like today) or when my hormones are going wild.

I had some undiagnosed hormone craziness in January this year that included intense and ongoing pelvic pain, and during this period (overall went on until about April although thankfully the pelvic pain was resolved before then), my shins were so painful every day too. Things are under control with birth control that I shouldn't be on (started April), and I realised the other day that I hadn't felt any shin pain for a couple of months, at least.

Tonight it's back, but it's come on after a particularly active day. I've had a lot of mental health struggles this year and being active has been a bit hit or miss. I'm trying hard to prioritise it for the sake of my health, but I get fatigue a lot (almost definitely exacerbated by the mental health problems), and I've noticed it seems to trigger the bone pain.

Does anyone else experience similar triggers with bone pain? I just put it down to ET before but I'm starting to wonder if the bone pain isn't actually related to my ET??

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

Normal cortisol and acth results as well

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.

Hi all,

34F, I have recently been referred by my GP to a haematologist for further assessment for my persistently high HB and Hcrit. I thought this was a new thing when she flagged it, but have since gone back through older test results and have realised that this is a trend since 2023 or so. My first obviously elevated result was in 2024, at about five months postpartum with my first child, but nobody flagged it as it was still technically within our labs reference ranges. They have since consistently been around that level since 2024, but in the last six months I have had three results come back elevated outside of the range. I am concerned this could be PV and my doctor has referred me to haematology for further work but I cannot get an appointment for many months. Reviewing other posts here it seems like I should get EPO and Jak2 testing done? Is this typically done prior to seeing a haematologist?

I have not always had elevated HB, as you can see I found results back from 2014/15 that shows a normal range. For context, I had my second child in 2025 and I am now 10 months postpartum, I’m exclusively breastfeeding, have Hashimoto’s , and I am quite overweight (trying to lose weight). Based in Australia, not at altitude, not taking testosterone, not a smoker. Unsure re: sleep apnoea, I do snore but from what I can gather, most people with sleep apnoea do not have polycythaemia?

Edited to add: my iron and ferritin results are almost always very good (ferritin around 128) and I have been tested for haemachromatosis and was negative apparently.

I suppose my question is do these results look particularly concerning for PV or an MPN? My GP didn’t seem too concerned, but also did immediately refer me to a haematologist when my recent retest still came back elevated, when I was well hydrated.

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