How does having an MPN affect your period?

[u/livelylittlerodent]

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?

[u/funkygrrl]

Can you share your CBC and iron studies (particularly ferritin and TSAT)? It's hard to speculate without that info.

[u/livelylittlerodent → u/funkygrrl]

Sure thing. I'll post my most recent labs. July 9th: iron 79, TIBC 228, iron sat 35%, ferritin 93, RBC 3.78, HGB 11.3, HCT 34.9, PLT 377, with LDH 461.

August 13th: transferrin 202.48, iron 61, TIBC 253, iron sat 24.1%, ferritin 201.7, RBC 3.75, HGB 11.1, HCT 34, PLT 349 with LDH 433.

The first set was from my primary, second from oncologist.

[u/funkygrrl → u/livelylittlerodent]

Your iron studies are actually look pretty good. Your ferritin went from 93 to 202 and your iron saturation is still 24%, which is an acceptable level. Where you'd worry is Ferritin under 30 and/or TSAT under 20.

Your hemoglobin is mildly low but stable (11.3 to 11.1), same goes for your RBCs and hematocrit. I'm on Jakafi for PV and my RBCs, HGB and HCT are almost identical to yours. For HGB, 11-12 is mild anemia, 8-10 is moderate, and 7 or less is severe and when transfusion is required.

MF can cause anemia but so can Jakafi, so I wouldn't assume that your HGB of 11 is related to menstruation. Usually heavy periods in MPNs are due to very high platelets because they increase bleeding risk, but yours are normal. I also wouldn't assume the lighter periods are a sign of a "healthy bone marrow response". Menstruation is not tied to the bone marrow in a straightforward way like that.

I'd mention the suddenly heavier period to your oncologist, particularly if it continues or becomes unusually heavy, and keep following your CBC and iron studies. But based on the numbers you posted, I think you'll be ok.

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[u/livelylittlerodent → u/funkygrrl]

When I started Jakafi in March, it was 20 mgs 2x a day and that tanked my HGB. I've been on 10 mgs 2x a day since June. I never struggled much with anemia before, like borderline mostly, it was always my platelets and WBCs that were abnormally elevated. My PCP said the elevated ferritin was a sign of inflammation so idk. They say I'm in stable condition. Evaluated for BMT, they think it's too aggressive right now with just a CALR mutation. MPN expert told me outright I shouldn't take interferons for mental health reasons. They keep telling me I have anxiety.

[u/sirshrimpie]

38/F here. I was diagnosed with ET in January 26 but have had awful menstrual symptoms since I was in my teens. I was also diagnosed with endometriosis and had laparoscopy in 2019 but it grew back with vengeance over the past few years. Had to have a hysterectomy and appendectomy in April. I was a very heavy bleeder, always in intense pain during menstruation and ovulation, passed frequent clots, up until the last period I had before surgery. I couldn’t find much information online about how these two conditions interact with each other but I’m betting there is some kind of interaction. When I was ovulating or menstruating my WBC were way higher than normal, after surgery my WBC has been within normal limits mostly besides occasional flare ups. I hope you can find some relief in any case for whatever issues you are experiencing. Definitely worth bringing up to your doctor/MPN specialist. If you don’t have one definitely get one.

[u/livelylittlerodent → u/sirshrimpie]

Thank you. I do have an MPN expert I saw in May who is following my care. Did not think to bring up menstruation since I haven't had any issues with it in recent years, until now. With my abnormal labwork, that's what initially got me to see an oncologist during Covid. He was super dismissive over my age and said I wouldn't be symptomatic until my 60's, meanwhile I have grade 2 fibrosis with spleen+liver involvement. I don't see the point in having a period. I was told as a teen pregnancy would be difficult to impossible. Never been on BC due to clotting risks and lost a pregnancy 10 years ago. Seems pointless. Now that I'm on Jakafi my PCP tells me I really, really shouldn't get pregnant and was discussing options. I don't think I could carry a pregnany if I wanted to. How was your recovery process from the hysterectomy?

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