Leaking bone marrow??

[Fika500]

I'm wondering if anyone can shed light on a red swelling I have on my leg. It came up quickly over a couple of days, is tender and my calf is a bit swollen. My haematologist says something about leaking bone marrow?? I have post PV Myelofibrosis.

[Chelle_]

That sounds more like a blood clot. I would get it checked as a matter of urgency....I've never hear of bone marrow leaking though to be honest. Good luck.

[Fika500 in reply to Chelle_]

Thank you for your reply but I'm pretty sure it's not a blood clot. I saw my haematologist on Thu. I think it's a rare complication of post PV Myelofibrosis. I can contact haematology if it gets worse. I just wondered whether anyone else had experienced it & could shed more light.

[linds in reply to Fika500]

Hello Jo

I have MF and have never ever heard of leaking bone marrow and I am treated by the best. Really does sound like a blood clot to me too. Do get checked by someone tip-top.

Linds

[Fika500 in reply to linds]

Thank you. It is so helpful to get advice from our community 👍xx

[light in reply to Fika500]

Hi, did haematologist was concern or wanted you to go for further investigation?

Wishing you well

[Fika500 in reply to light]

Thank you. He said something about it being a rare complication of post PV Myelofibrosis . He gave me antibiotics just in case but he's pretty sure it's not infected. He thought they may need to do biopsy. Advised me to contact haematology if it got a lot bigger, otherwise I'll see him in a month which is when I also should find out whether I'll go on Ruxolitinib.

[jane13]

nip into A&E jic....usually quiet sunday am but hots up in the afternoon as all the diy-ers have accidents!

[Fika500 in reply to jane13]

Thank you for your reply. I've done more research & I think it may be something called extramedullary hematopoiesis. Just wondered if anyone else had experienced it.

[jane13 in reply to Fika500]

I knew this happened in the spleen and liver but didn't know it happened in your legs - b interested to hear what yr haem says when u next visit

[Fika500]

If things don't get any worse, I'll see him in a month & will post back on this thread then Jane.

[Fika500 in reply to Fika500]

Just a quick update. My haematologist had feared it was extramedullary haematopiosis (doubtful spelling!) but it settled and he thinks it’s superficial thrombophlebitis. The lump is right over a vein.

[Mazcd Partner MPNVoice]

Hi Joe, I have checked with Prof Harrison for you and she has said: I would seek medical advice regarding this, looks like haematologist has seen it but if not or if worse needs review.

Best wishes, Maz

[Fika500 in reply to Mazcd]

Thank you Maz. My haematologist saw it two days after it manifested itself. He thought it was not an infection but gave antibiotics to be on the safe side & said if it got bigger to contact the dept. He said it may need a biopsy and asked to see me in four weeks. The lump is still there and a bit tender but not as painful & not bright red now. My appointment is two weeeks on Thursday. It is so helpful and reassuring to have this forum and advice from you and Prof Harrison.