r/MPN

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?

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?

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

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.

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 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!

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.

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! 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.

Hi! 38F in Canada.

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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